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

[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

Thread 7 -
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

danni why don’t you try him on the 5mg and see how he is tomorrow?

For us the melatonin now definitely helps ds get to sleep earlier, which wasn’t an issue before. He’s asleep around 8 instead of 9 which it had crept up to over the previous months and no shenanigans. In fact he’s already asleep which is a result.

School went ok today, though he was much quieter than yesterday. We were there about an hour and a half.

I’m not sure they would do an extended release gummy, doesn’t it need a coating to slow down the absorption? Likewise, if it’s crushed it acts more like fast release.

Hmm good thinking open I don’t know why I wrote that! I know if they are chewed they don’t work from ds other stuff he had for his adhd.

Ds gp rung me today and tried to book ds in for his COVID jab. They said they had him coded on the system as vulnerable and he’s able to have the jab now, which suprised me that they are doing kids this young, I thought it was over 12, but apparently it’s over 5, so heads up you may be getting calls!!

(Ds isnt vulnerable with his diagnoses as it’s not something that makes him more likely to get ill from COVID having autism and adhd) but anyway, I politely declined. He wouldn’t have it.

Or I don’t know if it’s bcos he’s got a learning disability diagnosis. I’m not sure why they are calling for him so young. But he’s not more suspectible to illness.

His school do COVID vax days, but it’s for the pupils over age 12 at the school as I’ve had an email, they haven’t mentioned the younger children yet.

I don’t know why I wrote that!

Wishful thinking innit.

I can’t see ds having a jab either.

Yes, Danni I saw earlier on a local Autism Facebook group that I am on that people had been getting calls re the vaccine with no physical health issues but the children were classed as vulnerable. DS has quite a few physical health issues but I don't think that they are relevant to Covid.

I am not having a good week. My DD tested positive for covid yesterday so I am stuck in the house and having to ask for loads of help with the school run. I am a complete control freak and don't really trust anyone other than my Mum and sister but they can't do them all. My neighbour who has a son in DS's class has witnessed DS's lack of road safety awareness and is a teacher so I think that I should have faith in her! I was trying to catch up with my work this evening as I need to record lectures but DD has woken again. She is very miserable.

However, deputy head agreed to act as witness at my EHCP tribunal hearing next month. So that is one good thing.

When I read about all your sleep struggles I do remind myself how lucky I am. I need sleep training for parents of SEN kids though - my own sleeping difficulties are v frustrating.

Carrie and Danni hope that you get the ADHD meds sorted

dimples so sorry dd is poorly and you’re stuck in again. I would struggle massively to trust anyone with ds too, so I understand. I hope you can find a way to get everything you need to done.

Re. sleep, is it something you’ve always struggled with or something new? Quite common during peri menopause for sleep to be poor.

Thanks Open. I was still working at midnight but got the lectures recorded. DS has woken up with a cough - presuming that it's a post covid thing. So at least I don't need to worry about getting him to school today. I think that he is probably well enough to go in but he cried when I suggested it.

I have always had sleep problems as an adult. I generally go sleep fine initially but then wake frequently throughout the night and then struggle to get back to sleep. I have better times and worse times but at the moment with DD poorly and having a lot on my mind my sleep has gone to pot - I am basically awake at some point every hour.

Any reason you don’t want him to have b6 Open? Isn’t he under a community paed? I thought all children with asd were? We have just yearly appointments but I do ring her if non General stuff comes up and she makes an appt. that’s helpful for us, like with melatonin issues. A community paed would put you on slow release repeat prescription in no time. Then again I’m sure our GP would!

There is a slow release gummies… the one we used I still have some that I use if I have the issues dimples describes ie waking and not being able to get back off for too long. I often just have half they are in my bedside drawer! I’m looking at them now I’m useless sending a pic but google natrol gummies melatonin 5mg non gmo. These are slow release. You can buy slow release online open I would hv thought with no b6?!

Dashing to work so sorry this is short… yes Danni spoke to adhd people! Long story short they say we were v v unlucky it’s a well tolerated med! They said it was perhaps too much, DS is v v sensitive that is true, recommended half dose then if no good a different stimulant then if no good a non stimulant. That all said a really nice poster PMd me and her DD had w v similar reaction to DS she is now on the non stimulant.

I do want a second opinion tho so have arranged a paediatrician call next week.

carrie ds is not under a community paed. We saw a paed at his assessment/dx, a follow up 6 months later and then discharged. When we first used the melatonin it was on repeat prescription but then we had a break because it wasn’t really helping. When we’ve requested it since they’ve issued on an acute prescription rather than repeat. I am talking to his GP about it tomorrow. If no joy I will ask to see a paed but I can only imagine how long that will take. Not sure if you can go private for something like this. Dh dead against buying it online.

Open we got melatonin prescribed privately then the private GP sent a letter to our NHS GP who put it in repeat for us.

Dh just tested positive for covid ugh. Got to test the kids tonight. My test was negative but I guess it's only a matter of time.

I do understand your DH. He sounds like mine! The GP should prescribe but no one makes life easy do they…

Oh no liv! I know so many people who have either had it very recently or have it now. It feels like it’s only a matter of time until we get it (again for me). It’s crazy compared to the first 18/20 months where it was much less common. I hope everyone is better soon.

Thanks open. Yes it's felt inevitable for a while. Me and dh feel awful. Weirdly my lateral flows keep coming up negative though. The kids are very happy about being at home. Dd tested positive but is fine and ds tested negative but I'm keeping him home with us as there's no way his tests are accurate.

Really hope you're feeling better soon Liv (and in a weird way, hope you get a positive test - it must be really frustrating when you know it must be Covid but the test doesn't confirm so there's that 1% of you that wonders!) Have you tried doing throat and nose? For some people that seems to work better.

dimples I hope your dd is ok, you’re not having a very good time of it lately are you

liv I hope you’re all ok!

open I hope ds is still going into school ok?

Oh no dimples and liv, sending positive thoughts for speedy recoveries.

Hello to everyone else too.

Liv it might be worth doing a PCR. I had a negative LFT a couple of hours before I went for a PCR which came back positive. That said if you test positive on LFT in the next few days then you can start the isolation period from when you first had symptoms. Hope that you are all better soon.

The day started well here as DD slept much better, it is day 5 and she tested negative on LFT. Yesterday DS had a big coughing fit first thing in the morning and said he felt poorly. Thought that I had better keep him off but then he was fine all day and didn't cough once. I sent him in this morning with my neighbour - 09:10 school called to say he was coughing lots please could he be collected. My kind sister (who works at the school) did try to persuade them to keep him as he has just had covid and doesn't seem at all unwell. Any way she brought him back here, he skipped up the path and not a cough has been heard since he left school....So yes, Danni I'm feeling exhausted. More positively my sister thinks that my stress/tired diet is working wonders.

I have an online meeting with DS's post adoption social worker at 1pm. I really don't want to cancel, the plan was to get DD down for her nap then but now there is DS to contend with too!

Seems a bit unreasonable of them to send ds home considering he's just had covid dimples. I hope the meeting goes ok!

Thanks for the suggestions. I clearly have covid so I'm counting today as day 1 even though the tests are negative and we'll all test on day 5/6 and see how it goes.

I spoke to ds’ GP and she has put the melatonin on repeat prescription for 6 months. Gave me the usual about how it can stop working without breaks, not for long term use etc. I also asked her about regular paed appointments and she said it’s not usual practice here unless there are other coexisting issues.

Big hugs to everyone dealing with Covid issues

open we only have an appointment yearly with community paeds, it’s been a telephone call for the past 2 years, they haven’t seen ds. Phone call is about 5 mins max. She has planned another phone call for December so I think going forward it will be like that. (They keep them until 16 before discharging to the adult team)

If we have any issues through the year we can ask for an additional appointment should we need it, but tbh there is nothing they can do really. They couldn’t even refer him for an adhd assessment, it was ds old school who had to do that.

We use them solely for his melatonin.

I’m pleased you have it for 6 months at least.

We don't have general paediatrician appointments either Open. We did see a developmental paediatrician for years and they dealt with Genetics referral, physio, OT, SALT etc but then when DS started school she said as he had EHCP she wasn't needed. At that point he was still under ENT and Endocrinology. His Endocrinologist said a couple of years ago that DS has complex needs and so he should have a paediatrician keeping an overview. So we had 1 appointment but they weren't v interested, but did refer him to Continence team and then discharged him.

Covid permitting we are at the hospital next week re the absences.

By some miracle I managed to get through the social worker meeting without interruptions

That’s good dimples. Are the meetings useful to you or just a box ticking exercise?

Ds a bit more reluctant to go in to school today. We’ve made some progress, he’s much better with sitting in the classroom before it’s time to go in the playground, but still keen to leave asap afterwards.

I think next week we’ll try and go in for some different activities rather than lunch to get him out of this rut. I’ll have to email them to see what they recommend.