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

Magrat glad new school is a hit so far.

I would think so open, he currently takes 2.5mg x 3 a day. So it’s a small dose.

From what I’ve read on here (limited understanding of meds to treat adhd I’m having to read bits when I get time) he should be taking 5mg, 2 or 3 x a day. Or 10mg 2 or 3 x day. Hes only on 7.5mg total a day for now. He’s on such a small dose because he’s just starting.

But I’ve also read not all meds work and it’s very trial and error.

But today, I won’t lie I’m disappointed, I don’t know what I was expecting exactly but I was expecting at least something.

Positive though, I managed to disguise in smoothie without his knowledge so that’s half the battle complete for now anyway!

I’m not surprised you are disappointed, I know how much you want it to help. How has he been at bedtime?

He had his melatonin at 8pm was asleep by 8.30pm.

I find it utterly bizarre every thing I read they don’t eat on adhd meds until dose worn off / lose weight / often struggle to settle to sleep - which I worried about (basically it’s like speed, stimulant type) he’s been eating all day and gone to bed.

It’s like he’s not having any meds at all. But he looks like he’s had them, ie Dh mentioned ds chewing his mouth / his eyes looked doped up / he’s licking obsessively around his mouth with his tongue. A bit like he’s off his tits to put it bluntly.

I’m even starting to think he hasn’t even got adhd and that’s why it’s not working. He DOES have typical adhd symptoms but he’s always been like this, I genuinely don’t remember ds as not being hyper / impulsive, he was like this as a toddler (2 year old at nursery) I watch the videos back of him at 1yr old and he was very similar then always moving / making noise / causing trouble. He surely didn’t have adhd at 1/2 years old.

What if this is just his autism personality?

Well I suppose one way to find out, keep him on meds, swap / change about and if it doesn’t calm him down / show any signs of working then it’s obviously not adhd.

If it’s genuine adhd then meds are supposed to be like the difference between night and day.

Ps I haven’t given him that other sleep med, I didn’t ask for it he just prescribed it.

He prescribed primiztharole or something sounding like that, can’t quite remember the name, but the bottles have come as phenergen which is just to make him drowsy. I’ve read online and those are the same thing so that’s what the other sleep med is. I think it’s in like night nurse, used to chill people who are nervous on an aeroplane etc.

He’s not too bad the past couple of weeks sleep wise so I’ll manage for now with melatonin.

I’m also having trouble with school again. Sorry to clog the thread up with my never ending problems.

Friday his teacher phoned me at 11.50am just as ds taxi had left, he said oh thought I’d ring you now ds has just left! (he is supposed to finish at 12 for starters) I told them ds was starting meds today, he said don’t send ds with his meds next week, (he finishes school at 12, they are due at 12, he’s home about 12.30) he said give them late, I said but then that puts his tea time one late and then it interferes with bedtime, last dose of the day has to be given by 4pm (stimulant, hellooooo) when ds gets in at 12.30 he needs his lunch first and then meds so would be having it almost an hour late, which then puts his last one of the day at 5pm rather than 4pm.

I asked why, he said because if ds messes about taking it then it’s a knock on effect, he’s late into his taxi, staff have to have lunch and it makes everyone late etc.

Load of excuses, so I just said outright but he should he at school until 3 anyway……

Literally sick of the shit.

They were supposed to send a social story home about medication, he said sorry we haven’t had time, fine but since ds comes home 3 hours early a day shouldn’t they have had time to do it in the afternoon (they knew he was starting meds this weekend)

Then the final insult as I was ending the conversation, I said ok then, so he has his meds at home next week (given late!!!) the week after when he stays longer (which was the plan!) I’ll have to give you instructions on how he’s taking it (I was never convinced ds would take the tablet orally, so I told his teacher I would find a way to get it into him and asked for advice from their experience what works best for other pupils and I’d find what worked best and let him know so they knew what to do when it came to them giving it) so he just went well we don’t think it’s right to increase ds hours for the minute, get him settled on his meds first then we’ll increase by ONE hour in about 3 or 4 weeks. See how that hour goes for a bit then increase another hour when we think the time is right.

I just said at the end of the day he’s nearly 8 I want him at full time school. 9-3pm then I got a load more excuses.

I’m not asking the fucking earth served on a plate 😡

(So sorry for the 5 messages in a row) too much to get off my chest.

Ds annual review is the 24th, it’s at 11.30am, being done virtually, ds home at 12.30, no one here to watch him - Dh at work and the annual review says it’s booked for 11.30-1pm on the letter. I can’t do an annual review get ds from his taxi and supervise simultaneously.

I mentioned this, his teacher instead of saying oh well we will keep ds an additional 30 minutes so you can get the review done he said he would fill all his parts in in advance so that it speeds it up so I’ll be done in the hour and if I’m not tell them I have to go as ds is home.

Literally they do not want ds 1 second more than they have to have him.

Don’t apologise danni, that’s what the thread is for - to share good news and vent about the difficult stuff.

You’re right, it’s crap. You need to raise this at the AR. Who will be there from the LA?

Just quickly reading Dannis updates. Will post more later but keep at it with the meds, surely they can’t be expected to work so quick do they? Also I really wouldn’t worry about is it not ADHD… as I understand it the meds treat the presentation/ symptoms in children which the prescribing Dr has seen rather than treating a specific diagnosed condition (someone may disagree and feel free to!!). So if a child is so impulsive/ hyperactive that it is really interfering with life, safety etc the meds are designed to treat the causes in the brain of that impulsiveness… whether that impulsiveness is defined as part of adhd or autism or a stand alone issue or whatever is neither here nor there is it? I’m putting that poorly im sure but it’s how I think of it.

I do massively think tho that dosage and even drug type for the same symptoms are hugely trial and error… like DSs epilepsy meds, some work for some kids, others don’t, some have side effects, some don’t, sometimes the dosage is wrong and that’s why they don’t work. So it may be that it’s just not quite the right med or right dosage but I wouldn’t worry that it just won’t work per se…

Thank you for comments re toileting btw… dimples do you mind keeping me updated even on a PM re the continence advice? Bizarrely this is a service no one has mentioned and at our local hospital I can only see OAP continence service but I’ll pursue…. Thought yesterday I am on it today, we all went to lunch for family bthday I was jumping up and down taking DS to the loo like a yo-yo he did wee most times. Then after one trip I turned to SIL for literally a 5 min chat, when I turned back DS had filled his pull ups. Didn’t tell us or give any sign and didn’t go when I had last had him in toilet like literally 10 mins before ffs!! I’m curious to what these people suggest so if you don’t mind me picking your brain dimples i would be so grateful.

Magrat absolutely, same false concern, same smugness, same attitude as your old Head. Anything over and above a minor speech issue and it’s special school territory they believe. You did make me think tho when you said there was a noticeable change in attitude after they knew you were looking elsewhere. My first SS visit was pre school had raised any concern. Long convo with the Head she asked about DS current arrangement. The Head here has told me since the SS Head is a good friend/ contact of his, the schools are in the same group etc. Did she tell him I’d been round? Is this an issue in everything? May be totally wrong but your remark Magrat just made me think.

Re schools danni are they within their rights to do this? If DSs school suggested reduced hours which they may do i would be saying that is no problem, I assume you are going to be paying my salary then that pays our mortgage as I then will have to resign from my job, how do you propose dealing with that? Do they assume they can mess around with DSs hours because it doesn’t matter to you/ you are around anyway?!

danni how was last night and this morning?

We went to a nearby NT property today. Ds decided that he didn't want to go to the farm and just wanted to go home. We ended up being outside for about an hour and a half in the end so not a total waste, but dh was pretty annoyed because we didn't see very much. I told him his expectations are too high. Ds fell asleep on the way home so he was obviously tired (up at 4:30 yesterday, 4am today).

He's back to whinging about screen time regularly, very frustrating.

@openupmyeagereyes I think a lot of it is about adjusting your expectations, isn't it? 1.5 hours would be a good amount of time for us somewhere, any more than 2 hours isn't usually good and I'd rather leave on a positive than the alternative. It's taken me a while to recognise DS' cues that he's ready to go though and it means we don't really go out with other families with NT kids as they just don't get it (and think we're too lax for leaving somewhere when DS wants etc!) Glad you had a nice day out (and I'd definitely class 1.5 hours as a day out). We went to a forest today where DS can just run, we go most weekends, it seems to help everyone regulate.

Magrat we had only been there about 50 minutes before ds started saying he wanted to watch YouTube, hence the frustration on dh part. I get it, but it is what it is. Usually ds is ok with (half) days out but occasionally they don't quite work. Ds and I went to this particular place during the holidays and we've been a good number of times before, but this is the first time we've not gone to the farm. Glad you enjoyed the forest trip . Woods and the seaside are just the best environments.

Danni never apologise for posting here. I wish that you weren't facing so many challenges. Hopefully the amount of medication just needs to be adjusted. Is anyone from the LA attending the EHCP review? Are they aware of how few hours DS is allowed to attend school?

Carrie of course I will keep you posted re continence service.

Open I am often a bit too optimistic about what DS can cope with and like your DH feel disappointed. It is hard sometimes not to resent one (or in my extended family) two people dictating what we can all do. We went to the beach yesterday. It was a beautiful day. It was a 45 minute drive there but after DS decided 30 mins that he was too cold - he had fallen over in the sea so was completely soaked. DS did at least ask me why I looked fed up as we walked back to the car.

@openupmyeagereyes ah yep, I see. I told DS youtube is no longer compatible with my phone because he got so obsessed with unboxing toys videos with these terribly behaved kids! Forest was good. Beaches however are a nightmare as DS just launches himself straight into the sea!!

I find it interesting reading this as I take DS out for hours on end and I now wonder if he could speak whether he would be telling me that isn’t what he wants to do? If your DC couldn’t communicate verbally do you think they would behave in a way that you knew we weren’t happy? I hope DS would, I’d hate to think of him being unhappy and not able to tell me!

Family lunch yesterday was 3.5 hours at a table! Obv I had snacks (for pre lunch!) iPad, a couple of wanders off, 5000 toilet trips 🤣🤣🤣 but otherwise he just sat there looking around, smiling at people and stuffing his face. How weird is it that school cannot even get him to sit for a minute, I find it so bizarre. I’d tell them stories like yesterday and they think I’m lying!

Glad everyone seems ok. DS got an appointment tmrw pm so I can pick him up before he poos his pants post lunch thank god (one less eye roll…) 🙄🙄

carrie I’m sure his behaviour would tell you if he wasn’t happy, it sounds like you don’t need to worry.

Magrat I meant for me! Good for kids too, obviously, but not quite so relaxing!

dimples that’s a shame. Yes it is hard but for us it’s our default really. There’s a lot we don’t do that we would if we had a NT child, things he just wouldn’t enjoy or that we’d need to leave after about 20 minutes so it’s just not worth it. Having said that, I think we are quite lucky because there is still a lot that we can do and ds is usually keen to go out.

@openupmyeagereyes oh yes I see what you mean!!

Open it was more about DD. She was having a great time but it was so brief because of DS. If I had tried to get DS to stay out longer he would have made it awful for DD and me with screaming and aggression.

Carrie DS can be happy going out for hours but if he didn't have his speech and wanted to go home I imagine he would be screaming and throwing things.

Yes dimples, much harder when you have other dc.

Ds not in school today. The last two mornings we've made it to school but he's refused to get out of the car even when the TA comes to try and persuade him. He did not have a great night, asleep at 9, awake at 3:30 and refused to sleep in his bed. He's just very out of sorts again, and not because anything particular has happened, it's just being back at school.

I got that cahms consultants reports this morning, honestly if I wasn’t already feeling as shit as I do..

He’s diagnosed ds with oppositional defiance disorder, severe anxiety, (he already had a diagnosis of moderate learning disability) but he’s wrote in his view ds has a significant intellectual disability and global development delay, also sensory processing disorder (which we knew about his sensory issues but that’s always just fell under ‘autism’) we knew ds had all these symptoms obviously but it’s always under the autism spectrum umbrella, now he’s diagnosed individually.

Those are to go alongside his moderate autism & severe adhd diagnosis’

Poor kid.

Sorry for the woe is me. He’s not a poor kid really, I can think of others in worser situations, just not nice when it’s your own with all these problems.

Well his meds aren’t working, he’s just his normal self, school have said the same today, they wouldn’t of known he was medicated if they didn’t know I started him on them oh they told the taxi driver all this and she passed the message on 🙄

He has another CAMHS appointment in 4 weeks (but I’m going to have to change the time because it’s mid morning) it’s a school day and his school is 35 mins away so I need it later in the day or school holiday because I’m expected to do the travel for different times due to appointments.

I’m taking him to feed the birds soon, he likes to do that and eat the bread as he’s supposed to be throwing it 😆 I have to hang on to him because I know birds are supposed to fly away but ds is too quick for them 😳🤣 might pass the afternoon away a bit.

What a nightmare danni. Sorry the meds don't seem to be doing anything when will they review them? That letter sounds like a lot to take in, but it's good that they have clarified all his conditions, hopefully it will help to get more support in place.

Sorry ds didn't get into school today open.

Dimples we often have that problem where dd is having a great time and ds just wants to leave. Me and dh mostly split things up now to get around it (I know that isn't really an option for you). I must say though as dd gets older she is getting a bit more understanding about why we have to leave places suddenly or early.

Hope the appointment went ok Carrie.
*
Magrat* what is it with the unboxing toys?! I think the kids would watch them all day if I didn't stop them.

After last week's bus debacle they turned up half an hour early this morning and tried to rush us when we weren't ready. There was nearly a meltdown but we did manage to coax ds onto the bus in the end thankfully. Hoping everything settles into more of a routine soon.