Reception auties 2018/19 - thread 2

[openupmyeagereyes]

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

How is everyone? I hope you had a great bh weekend!

Things have been pretty good here. The last 5 days sleeping has been better. I spoke with the GP today and she has recommended giving him the melatonin every day for two weeks. She said that it doesn’t have a cumulative effect but that regular use is supposed to re-set the body to produce melatonin at the right time. This is how it’s given for jet lag for instance. That’s the theory anyway, we’ll keep giving it and see how it goes. Luckily he now takes the tablet no problem with water, we give it about an hour before we want him to be asleep.

The weighted blanket is on its way. No idea if he’ll even like it though.

We had email feedback from his teacher following the meeting we had with the specialist teacher. She ran through the actions that are being taken which is all positive. He went to school fine this morning, hopefully this will continue too.

Open there is a little boy in reception who went to nursery with ds and he moved to the same school as ds (they are in different classes now) he has asd although he seems a lot more higher functioning than ds when I see him, but I used to speak to his mum at nursery (don't see her now because of the different drop offs I do with ds (although her ds is allowed fulltime & they also have another asd boy who is almost non verbal but he is also full time!) just ds who gets fobbed off with shit hours!! but anyway she mentioned his poor sleep to me and the melatonin & he took it for around a month and it 'reset' his body clock and he sleeps 8pm - 6am every night (well I hope he still does! lol) without the melatonin now.

We are to see ds paed this week so shall go pick prescription up off her, she did say at this appointment he could have it as his operation is done with now that was the only reason he couldn't have it last year, do you just go to a normal pharmacy with prescription? Do they have to order it or anything?

Friday night he's having it, can't wait! lol! X

Ds was awake last night 11pm until 2am then awake at 5.15 for the day wtf

Do you all regularly see & speak to your dc class teacher?

I only see his 1-1 on a daily basis and rarely his teacher will come out with him (every 8 weeks or so she will bring him out instead of his 1-1)

I've never sat in a meeting with the head, she doesn't attend anything.

I've only spoke to the head once and that was in Tesco bcos she recognised ds! So we spoke for a minute.

I literally only deal with ds' 1-1.

Open you know it's bad when your searching at midnight 'melatonin inducing music' on YouTube on the iPad. Lol

Sorry didn't mean for that to come across as rude about the non verbal boy with asd being allowed fulltime in ds' school.

God I can't half word things! Didn't mean for it to look so rude, I just read it back and thought it didn't sound right.

What I meant was, there's also another little boy who is almost non verbal (he says a handful of single words) and he is younger than ds (ds is 5 and a half the other boy has just turned 5) but he but is allowed fulltime and has been from the start, I should of put emphasis on the 'younger than ds' in my first post & also why I wrote non verbal was because it gives you an idea of how much support he requires. Ds needs a lot of support too obviously, but he isn't allowed full days, it just annoys me that 2 other SN children can do full days but ds cant.

X

Although I don't think the other 2 boys have behavioural issues quite like ds, so that's probably my answer, lol!

Post overload today. Sorry!

Open were did you purchase your weighted blanket from and what size / weight did you buy?

One of those has been on my to buy list for a while but I never knew which one to get and they are expensive so didn't want to make the wrong decision.

danni that is music to my ears... both times I’ve filled his prescription it hasn’t needed to be ordered, it’s been in stock. I think because it’s prescribed to the elderly who have trouble dropping off too. Do you think he will take the tablet ok?

Have you ever tried giving him Piriton in the night to make him drowsy? The GP has mentioned to me twice now that it can sometimes be used. Ds has never had it before so we’d need to give it to him in the daytime first to make sure he’s not allergic to it.

Ds’s teacher is always at the lineup in the morning and she has said we can talk to her at any time, plus there’s a class email that we can use for communication. We’ve had a couple of meetings with the head but ds’s school is quite small (about 160 dc) and ds is possibly their highest needs child (I’m guessing here but it’s likely) so that’s probably why.

danni we got one from Senso-Rex. It was £119. They were the highest rated on an article I saw. There are tons of companies making them though, many cheaper. Ds is about 19kg so we ordered a 2kg one.

Danni it must be very frustrating re the school hours. What is the school's plan there?

I don't see DS's class teacher to talk to. I see her every day I pick up as the children all stand next to her to spot their person. Once or twice she has come over to me. At parents evening I was given a longer slot (15 rather than 10 mins) but I didn't think that was really long to discuss short sen support plan. I have only met the HT at the EHCP meeting last April and similarly the SENCO only at EHCP meeting - someone else became SENCO in September and the first time I met her was at EHCP annual review a couple of weeks ago.

We also have a home-school communication book which I lobbied for, for a while but this is mostly concerned with toileting

Ladies ( I just realised that I’m assuming you are all ladies...!) I’m not a big mumsnetter , I first came on about a year or so ago when I started seriously realising that my ds has asd. I didn’t find it very helpful, lots of judgey people shouting about things they couldn’t possibly understand etc. And then I found this group, which was positive, uplifting, supportive, interested, responsive and kind. I was bored this evening and had a look at the main boards again and was so shocked to see how some people speak to others and how people speak of autism like it’s a disease. I just wanted to say thank you for being so totally opposite to everything I read tonight. I won’t be venturing out again for some time!

Oh Jeb, that made me a bit teary! (Though I did have a small earlier...)

I do love this group though.

I love this bit too

Jeb I'm a long time lurker and a DF of an almost 4 year old who is diagnosed with autism and i have to say this board has kept me sane over the last 6-12 months trying to see a path forward.

Fortunately we have secured a great school place at a local special school for September. I can only hope he takes to it as he isn't having much fun as we're trying to increase his preschool hours. Mainly because he is a poor eater. His food is routine based and will resist eating anywhere he doesn't usually eat. So he gets hangry and the wheels fall off.

He has quite a spiky profile. He is potty trained and dry at night and his gross motor skills are age appropriate but he remains mostly non verbal except for some single words and has no social awareness. He has taken well to PECS so he usually is able to get a message across but sometimes the frustration just takes over and whilst we can calm him from a meltdown, non family members are unable to.

He often gets overloaded when an environment is too noisy or too hot .

But he is a beautiful, smiley, cuddly little boy who thankfully loves his bed (we know we're very fortunate on this one). He has a wicked mischievous sense of humour.

Unlike some we have had great support from portage and our local authority who have been working with him in preschool and he has shown lovely progress in some areas.

But the reception journey is about to commence....

Jeb I’m sorry that you’ve had that experience . I’m trying to stick to the SN boards and a couple of other threads at the moment, mainly to try and limit my MNing time so I’ve not seen much of what you’ve described. In truth I knew very little about autism myself before I began to suspect that was what ds had. My knowledge was limited to what I saw in mainstream media and the little I knew about two autistic children in my DSD’s family. I suspect that’s true of most people and I hope their views come from ignorance rather than malice. A little knowledge is a dangerous thing and all that. Please do come back here if you need support or just want to share, good or bad.

Hello HopesDaddy, it sounds like you’ve had quite the journey! Glad to hear you’ve had great support. Things have been quite straightforward for us too so far.

Congratulations on securing the school place, it sounds great. A spiky profile is quite typical with autism and most of our dc have one too.

We were really worried about our ds eating lunch when he started school as he’d never eaten in his nursery. After the first week he started eating and he’s been fine ever since (though what he eats is a separate thread entirely...). When he first started I used to give him his proper meal when he got in from school and then a snack later on. Once he started eating at school I switched it around.

As for us: we’ve had a couple of early starts, 4am yesterday and 4:25 today. Today he seemed to wake up having a dream about us taking him home from soft play. He was whinging and yelling about not wanting to leave for several minutes before he woke up properly . Our poor neighbour. The weighted blanket is arriving today after a trip around Poland and Germany. I’m keen to see what he makes of it though I suspect it will just get pushed onto the floor!

Yesterday I saw the dietician. We’ve not booked another appointment as there’s no change at all to what he’s eating. She’s given me their updated booklet on restricted eating so I’ll see if there’s anything new in that. If things change we can re-refer. I’m struggling to find an omega 3 liquid for him. Boots seem to have discontinued the one we were using and the only one I’ve found that doesn’t contain other vitamins contains evening primrose oil which gives me pause for some reason. Every other one seems to contain vitamin D and he already has the maximum dose from his Wellkid syrup.

He’s still fine going into school thankfully and the last several days have been ‘excellent’ apparently so currently good on that front.

Light how was your girly weekend away?

I hope everyone is having a good week.

Just a quickie I'll be back on later x

Open we get this one from amazon, I researched for ages for the best one, we did use the vegepa chews for a while but they aren't that high strength really, they recommend 1000mg per day or more for asd so I changed to this, ds has 5ml per day.

It tastes of lemons (not fishy) & ds thankfully takes it off the spoon but when he wouldn't I use to mix it in a juice.

It was amazing open! Weather was rubbish but still managed to swim a couple of times, and most importantly just catching up with friends, eating lots of cheese, and doing lots of nothing much (reading, drawing, pootling). It is so nice having a couple of days with no commitments and nobody needing much from you. And OH was brilliant at home, so the kids had a nice time too! I think OH may need a holiday now though...

Welcome HopesDaddy! Great that you have found a school that "gets it". If you've got that then I think they'll find a way for your DS to get comfortable eating in school (even if it's only a snack). We found it's really hard to predict what will go well and what will be hard. Some of what DD has found hard and easy has been predictable, but lots hasn't (and overall she's taken to school much better than we dared hope).

I must look into the supplements ... my two don't take anything (I even have some drops in my cupboard for Vitamin D, so must go back to using those at least...)

Thanks danni I think I’ll give it a try.

Glad you had a great time Light. I’ve been away overnight 3 times and it is a lovely feeling but I’m always so happy to see ds again afterwards. And I love cheese, I miss going to France.

I think if your dc are good eaters then you don’t need to worry too much, though vit D is probably a good idea. Ds is a dreadful eater as you know.

The blanket has arrived. It’s weird. I’ll let you know what ds’s reaction is.

So glad that you enjoyed your weekend Light

Welcome Hopesdaddy - when I read your post about your DS having a spiky profile I thought no wonder other people struggle to understand autism - my DS's spiky profile is pretty much the opposite to your son's (toileting is a nightmare, motor skills v delayed but he eats and talks well). I think that the term 'spectrum' does not help - as that conjures up in my mind a linear image whereas I understand now that it's more helpful to think of it as a circular histogram.

Hope that the weighted blanket is a success Open

So far he’s said it’s very nice but he won’t keep it on...

Yes we are much trickier on toileting and gross motor, but pretty good on eating, talking and sleeping. I think that cartoon with the colour wheel is a much more useful idea than the spectrum (the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/).

I've sometimes thought it is also a bit like a graphic equaliser, where Neurotypical people have most of the sliders set towards the middle, and autistic people have a lot of the sliders set at the extremes (but therefore can have totally different characteristics/challenges/skills to each other).

So ds fell asleep with the blanket on and he seems to like it. I took it off after he fell asleep because I read somewhere that the recommendation is that you don’t sleep with it on now. However, I’m struggling to find categorical information on it. I guess if he wakes we try putting it back on.

liv how do you use yours? Does your ds sleep in it?

Open we got melatonin today, his consultant gave a 3 month supply & I'm to just ring every 3 months for a new prescription from her. & have to pick it up from the hospital & get it from the hospital pharmacy each time. She said the gp doesn't deal with it here.

We have liquid, he's to have 2ml (2mg) per night 30-60 mins before bed.

She said keep a sleep diary for 14 nights and if after the 14 nights it's not made much of a difference to phone her & she will play around with the dose.

Any tips? I feel horrid resorting to this.

I know it's a natural hormone etc, but I still feel awful x