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

Original poster

Reception auties 2018/19 - thread 2

998 replies

openupmyeagereyes · 14/12/2018 08:05

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

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Original poster
openupmyeagereyes · 13/03/2019 19:53

Sorry, that should have read dimples.

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Original poster
openupmyeagereyes · 15/03/2019 12:09

Well, we’ve made the line 4 times this week. Woo hoo. I’m enjoying each day that he goes in without a struggle while knowing that it could change at any time, so not getting my hopes up.

Sleeping has gone a bit pear shaped but I’m hoping it’s a blip as he has a slight cold. He was up for the day at 3:30 yesterday, last night woke at 3:30 but back to sleep an hour later until 6:30. Maybe tonight he’ll sleep through again.

How is everyone else doing?

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dimples76 · 15/03/2019 15:54

Well done Open and DS!

My son had a friend to play after school yesterday and it generally went really well. I've asked her Mum if I can borrow her daughter every day as they raced home and we got back home in less than half the time than usual. I also found it slightly depressing though chatting and playing with them as so v.different - I know - don't compare!

livpotter · 15/03/2019 16:14

That's great about getting into school open and the play date dimples.

Not a lot going on here. There's another school visit coming up in a couple of weeks, which I'm still undecided about. I'm going to take ds the week before and see how he is.

Our council is currently running a commission to make lives better in our borough so I went to the disabilities meeting this morning. It was interesting as I thought I didn't have that much to say but once I got started chatting to other parents it really is crazy what out council gets away with. The councillor looked very harassed.

Otherwise I'm just glad it's the weekend!

Original poster
openupmyeagereyes · 15/03/2019 18:41

dimples it’s impossible not to compare sometimes isn’t it? I think it’s only natural Flowers. At least he’s having play dates with children from his class. Ds hasn’t had any yet, though I haven’t arranged any either so partly my own fault.

liv good for you, the more people that go to meetings like this the better. What sort of place is the next school trip to?

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livpotter · 15/03/2019 19:03

It's at the British Museum, which I think ds will love but it's also massive and he can be pretty challenging to reign in. It's on his day off so I will take him there separately and leave when we need to!

Original poster
openupmyeagereyes · 15/03/2019 20:37

Yes, it is massive. Think I’d want to go too.

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danni0509 · 16/03/2019 12:31

I spoke too soon about ds' behaviour,

It was never good just slightly better, but I've had 2 days of utter hell.

His thrown a toy at my wall this morning and put an actual hole in the wall Sad

danni0509 · 16/03/2019 12:33

We rent too, it's a new build.

Was immaculate when we moved in..........

I've got no door handles left he's ripped them all off given up screwing them back on.

We've patched chips out the wall & repainted several times already, had to replace a carpet etc etc

I'm off to buy a caravan to live in !

danni0509 · 16/03/2019 12:42

P.s the caravan I'm buying and moving too, will be alone!! Grin

consultant neurologist we see at the epilepsy clinic on Thursday said ds had severe adhd & needs medicating. He is meeting his autism paediatrician to request a referral to CAHMS to be assessed and diagnosed, CAHMS diagnose adhd here. For what use they'll be I've heard nothing but rubbish about the service.

We went about epilepsy which he hasn't got (thankfully) but came out with adhd!

The neurologist & epilepsy nurse were genuinely shocked by ds hyperactivity & impulsivity in the clinic, and to be honest that was ds only revved up to about 20%!

We see the paed in May for melatonin, can't offer us a sooner appointment unfortunately, ds and of course I had 4 hours sleep last night.

danni0509 · 16/03/2019 13:05

I've always thought ds had adhd, since he was about 18 months old, but he 100% has sensory processing disorder and the symptoms overlap so much with adhd.

So no idea what I have on my hands on top of his autism.

But all I know is ds is such a sensory seeker he spends his life seeking sensory input, it massively rules his and our lives and the sensory things we do and school do are not cutting the surface, so maybe it is adhd, I just genuinely don't have a clue at the minute.

Anyway must dash I bought ds a physio ball which amazon just delivered so I'm pumping it up and he can bounce himself silly on it!

danni0509 · 16/03/2019 14:16

Back again, ds is bouncing on his ball under mumsnet supervision. Although he doesn't seem that interested in it Hmm

Just wanted to add this picture, it was in the back of that sensory book I bought what you recommended open.

Think it's so true, we can try fixing all the problems behaviour, sleep, eating etc etc but we need the root of the problems firstly.

Reception auties 2018/19 - thread 2
SueVide · 16/03/2019 14:48

Bless you Danni0509 Flowers sounds like a tough few days. Hope the ADHD team are better than their rep or at least good enough to get you access to useful resources.

The sensory stuff is so wearing. DS is v sensory seeking and it's exhausting to manage. We have a gym ball and a new yoga wobble board which DS lives on. My mum's making him a weighted blanket as that seems to calm him at OT sessions. Trying new kit is all v hit and miss and quite expensive when you add it up - Thank goodness for his DLA.

danni0509 · 16/03/2019 15:39

Oh yes SueVide dla is a god send I couldn't buy half I buy ds if it wasn't for that. it is so useful. I agree about buying new kit being hit and miss though and it all adding up. X

@openupmyeagereyes have you applied for dla yet? X

Original poster
openupmyeagereyes · 16/03/2019 16:54

Hi danni. No, we haven’t applied yet. I must get around to it.

It sounds like you’ve had a tough few days. I hope you can get an adhd dx ASAP, maybe medication will help settle him down and give you a bit of rest.

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SueVide · 16/03/2019 16:56

Agree Danni our paed was pretty rubbish (think we're discharged now we've got a diagnosis) but she was adamant that we should get DLA and EHCP done as soon as poss and they've both been invaluable.

Open if you haven't sorted DLA (and its a v emotional process) see if you can get local help/advice. Our children's development centre has a welfare rights officer who helped us apply for DLA. She was so good at asking questions about DS and drawing out the evidence. The cerebra guide to DLA is also v good. I put it off for ages as I couldn't face it but it's really been worth it. Not least as proof of disability when we need help in public places (and the odd discount helps too).

dimples76 · 16/03/2019 20:34

The queue jumping you can do with DLA is fab too!

Danni I do hope that the ADHD team is better than their rep. My son's paediatrician has not referred him for either ASD or ADHD assessment as she thinks it could be either (I think both).

I went on a sensory course today organised by a charity and run by an OT who has a lot of sensory issues herself. It was fascinating hearing her description of her reactions to different stimuli - she was very open and generous. I gained a lot of good ideas and insights. Feel like a sending spree may be coming on ...

Original poster
openupmyeagereyes · 16/03/2019 20:41

Oooh dimples, do share. What’s on your shopping list?

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dimples76 · 16/03/2019 20:54

Nothing v exciting Open! My son is v short (off the bottom of the height centiles chart) and she kept talking about how much more difficult everything is if your legs are dangling. He has a stool to support him on the toilet at home but nothing at the dining table or in the car (which I'd never thought about - she recommended an exercise ball on the floor so I'll have to make sure that I get the right size to ensure that it's not thrown around). I've been meaning to get a peanut ball for a while now. I took DS to the first session last week and he loved the stretchy lycra tube things that they can get inside.

Original poster
openupmyeagereyes · 16/03/2019 21:00

Oh yes, my ds loves the Lycra tunnel too. His OT usually leaves it at school for him. You can use it for tug-of-war too and probably other stuff.

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Original poster
openupmyeagereyes · 16/03/2019 21:03

The Tripp Trapp type chairs you can get have a foot rest. We had the Baby Dan version which was much cheaper but sadly ds refused to use it at a certain point because he wanted to use a regular chair even though he couldn’t reach the table properly!

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dimples76 · 16/03/2019 21:36

@Open I wanted to get a tripp trapp chair a while ago but decided it was too expensive. I think that I'm going to investigate cushioned stools (not quite sure if what I'm thinking of really exists!)

Original poster
openupmyeagereyes · 16/03/2019 21:55

We still have our Baby Dan one. You’d be welcome to it if there was a way to get it to you.

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LightTripper · 16/03/2019 23:12

We have the Baby Dan ones too. Harder to adjust than the Tripp Trapp but doesn't need doing very often, and much cheaper!

dimples76 · 17/03/2019 08:33

That's really kind Open. I feel that I ought to have got one before and unfortunately it's probably too late to introduce one now. When his friend came on Thursday she asked why DS has a 'baby seat' on the toilet - he just has a cushioned seat with handles and a stool so that he can climb on easily and be supported when sitting. He was upset about this and keeps muttering that he is not a baby.