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

Also I spent 10 mins on the phone to her crying.

I have honestly had enough today.

Big hugs @danni0509 all sounds tough but it must be a relief in a way that other people see how hard it all is. But then I know the familiar guilt that follows as you feel awful about saying your child is hard work as it's not their fault etc. But it doesn't make it any easier on you in the moment. Esp with the challenging behaviours.
We have been denied melatonin unless we go for a full review sigh, just told to strengthen bedtime routine...rolls eyes!! But I've worked out he needs to be awake for 14 hours to fall asleep so I got him up earlier today! I've been letting him stay up until 9 ish and then going up as otherwise its such a battle. We went out for lots of running races round a country park today too!
I hope you get a good medication pattern sorted out @danni, it could make all the difference. I have had to hide junk food today as DS is relentless and has no impulse control, I think it's anxiety as he's already worrying about going to new school. Now I'm wondering if he'll ever get in the transport etc. I have an interview next week too for a different more local job but it's all such a balancing act all the time.
Hope everyone else is doing OK. We are doing pizza Friday here in a bit and I'm enjoying the last few days before DH starts his new job on Mon!

Magrat sorry ds is already stressed and it’s a no on the melatonin for now. Are you going for a full assessment?

danni great news about the adhd dx, hopefully you can start some medication soon and he calms down a bit. I know you don’t want to do it, nobody plans this, but needs must

Likewise don’t feel bad about asking for respite if you need it. It may not be something you want but if it helps you cope then it’s important to find something you’re comfortable with. It sounds like you’d have no bother since the psych and school don’t know how you manage. I hope you were honest with the psych and told her how hard it is.

Danni I'm so sorry you've had such a rubbish day. Great that he finally has a dx and they are talking about medication! From you're posts I have no idea how you have managed all this time without respite, you definitely deserve to have some.

Magrat total eye roll! I really don't understand why they make such a fuss prescribing melatonin when it can make such a huge difference to our kids!

We just had a lovely holiday, rented a house with some friends with similar age kids. Ds was NOT happy about going away and we had a proper job getting him into the house but after that he was brilliant. All the other kids played together and he joined in when he felt like it, the rest of the time he took himself off somewhere quiet and did his own thing. I couldn't quite believe it to be honest and it gives me some hope that a holiday like that might work again.

Ds is currently obsessed with goo Jit zu dinosaurs (?), they have them at Tesco's so that's my main source of bribery right now. I wish he could find some cheaper obsessions!

Magrat, welcome back!! Glad your hol was fab. I know it’s not everyone’s choice but would you order melatonin online? We did for DS before it was formally prescribed. I obviously did my research and it was a very reputable company. DSs OT is American and she always says it’s crazy, she can buy it from the Boots equivalent in the States.

Liv, your holiday sounds lovely too, sounds like DS had a really nice time. Counting down to end of aug when it’s ours. Crazily I’ve just found out a friend is going at the same time to not far off our place with her DD who is a good friend of my DD and her DS who has SEN too so they totally get it if DS kicks off or whatever as do we with her DS. Hopefully we can get together a bit.

Danni, I think you have to look at what positives are coming out here. You are getting meds for DS, that could be a game changer for you all. If you can get on top off (or lessen) any behaviours that gives you massive scope for all DSs positives to shine through and you know they are there, he’s really bright, funny, lots of other good things. Unfortunately it’s all masked at the moment by something he can’t control but the meds may do that.

As for respite, you need it in the here and now so just take what you can get. Who knows where you may be after a few months of meds but if this is on offer at the moment take it and get a bit of a break.

We are ok. DS quite happy, DD ruling the roost as usual (she’s 9 going on 19 making up for DS who is 6 going on 2 in many areas ie emotional behaviour!!). Like Open we are trying to do trips out when we can.

Heard the useless senco at school has resigned… I’m sure it’s cos of us 😱😱.

Have a good weekend everyone x

Danni I am so glad your DS got the diagnosis and that profs are recognising who challenging it is for you to care for him. Fingers crossed that the medication works and that you can get some respite.

DS's toileting accidents have driven me mad today, I have just had to strip my newly changed bed after having to sort the sofa earlier. He has just spat in my face so I have had to walk away from him. Who knows what havoc he's causing in his bedroom. So it's not a very jolly holiday here at the moment. We're going on hols on Friday but I'm not really looking forward to it as we're going with my Mum and sister and DS keeps fighting with his cousins and DD is not sleeping well. It all just feels like a lot of money and effort to have a shit time somewhere else. At least with expectations this low I'm unlikely to be disappointed!

liv the holiday sounds great, lovely to have friends you can go away with.

carrie enjoy your days out.

dimples sorry about the ongoing toileting issues and behaviour. Hopefully the psych evaluation will provide some insight and help. Is ds bribeable for a week of decent behaviour on holiday?

Everything ok here. Ds has asked about school a few times, the other day he said he hadn't been at school for ages! I was telling him during the last half term that he would miss it over the holidays. It doesn't mean the novelty won't wear off after two days back though

danni I hope you're ok, it must be a bit overwhelming at the moment.

@danni0509 hope you are OK. We have a disability social worker, definitely far better than the safeguarding strand of social services. Definitely give it a go. DD we get 6 hours per week term time and 15 hours school holidays.

Mumofsend what does the respite consist of?

Ds slept until 6:15 this morning. I genuinely can't remember the last time he slept that late.

Thanks all x

Hope everyone is well. Sorry for the silence.

Open. Respite here is ‘workers’ employed by the council taking them out (2-1 if necessary, which with ds it is) or going to a foster carers house if overnight respite.

I wouldn’t allow it. I’m not generalising, but I know 2 people that do that job and I’d worry about them taking a dog for a walk (I mean for the days out bit)

Ds is a complete utter nightmare darting off and all the stuff he does, he’s so bloody quick and if I struggle to cope being as experienced as I am with him I know a million percent they will too, especially without the knowledge of what the fuck to do with him in all the situations he puts us in, it would be disastrous.

I’d worry about him going to a foster carers house (even though I know the type ds would go to would be trained in all things ds but not specifically trained in DS and I think that’s the problem) but he does unbelievable things at my house and their house would be no different, in fact probably more so as it’s a house he doesn’t know.

I don’t know what the answer is, but I’d worry more him going for the respite wondering if he would make it home alive so the respite would be me sat worrying.

I’ve thought about getting special childcare for MY house on an evening now and again ideally for when ds is in bed so me and Dh can go to the cinema or for food but ds bedtime is whenever the fuck o clock. He’d never go to bed for somebody else so that’s not an idea I can entertain right now. Plus I’d be annoyed having to pay for it myself as they charge a lot (somebody I know uses a teaching assistant from the local special school and they pay her £15 an hour, I couldn’t afford that not working)

I know you can get direct payments from social care but my granny used to do that for my Aunty and she had to ‘employ’ the care and pay holiday pay / all sorts. Don’t think I can be arsed with that, wouldn’t know where to start!

Ds school is a residential school, he’s a day pupil. (For now, hopefully they won’t kick him out 😂) I know they do holiday respite care. He has his annual review in September so I’ll ask, as maybe he’d be safer in a school set up type thing who know him and know what he’s like no idea if it’s just days or nights aswell and no idea about transport to respite probably be down to me to take him / pick him up, but then I think they won’t even have him a full school day so they will probably say they are full for the respite. I need finer details.

I think if school just took him for the full time they are supposed to instead of 2 hours a day that would be a step in the right direction!!! Speaking to them the day he goes back as it’s not continuing, my mental health is shot to shit.

My dad made an unscheduled visit this afternoon to bring ds some cookies and Cadbury yoghurts on his way back from the shops, he stayed an hour, ds shared his cookies with him, raided my dads wallet and took all his pound coins (he’s obsessed with spending pound coins) he was really nice and polite and even my dad said as he had a bang on the head. He made me laugh when my dad left, he said ‘thanks for coming grandad it was lovely to meet you today’ 😂😂😂

His medication appointment they told me would be a week or so, that was a week ago, got a letter this morning it’s the middle of September ffs!

Would be interested to hear about your respite experience @Mumofsend x

DS' party went fairly well aside from some silliness with food trying to take his cousins food, who then got really moany, but overall DS did v well and had a good time I think. Lots of big bubbles outside and balloons so very sensory for him. His bday isn't until Thurs and he's v excited about having his choice of takeaway! We've also bought him a trampoline as a surprise and we're off glamping for the weekend. Current obsession is making smoothies and freezing them so I'm quite looking forward to some time away from the freezer!!

That sounds like a great birthday @MagratGarlikInDisguise, and I'm glad he enjoyed his party!

@danni0509 that's very sweet what DS said to your Dad! Annoying on the appointment wait though ... that's a bloody long week!

@MagratGarlikInDisguise I hope your ds had a lovely birthday 🎉

Belated happy birthday to your ds Magrat. I hope he had a lovely day and you enjoy your weekend.

Hope that you're all okay.

We survived our holiday away and had some lovely times. On the way home yesterday we stopped in village we used to stay nearly every year when I was a child. DS ignored me when I tried to stop him playing with a gate, hurt himself and then started screaming. His screaming caused his sister to cry hysterically which increased his agitation and he hit her on the head and me. As I tried to comfort them both I thought how different my life is than what I had envisaged when I visited the spot as a child and imagined myself returning with my family.

When DS hurts himself or trips (even when he saves himself) he often becomes completely out of control. Does this happen with any of your children. I'm wondering if this response relates more to his trauma background rather than autism.

Magrat glad that the birthday celebrations went well.

Danni so frustrating re the appointment. DS does not have a disability SW but our post-adoption SW is one of the kindest, non-judgmental, most supportive people I have met so I hope that you are allocated someone good and can get DS's school hours increased.

I’m reading a book I like at the minute.

Divas & dictators (Charlie Taylor)

It’s not even specifically aimed for SN kids as I haven’t seen autism / adhd / insert any other condition mentioned at all, the guy who wrote it is a behavioural specialist & is head teacher at a special needs school for children with challenging behaviour.

I bought it agesss ago, read 1 chapter and never went back to it.

Dimples, ds is obsessed with broken bones so if he hurts himself he is now a massive hypochondriac, I thank his old school for that, he used to not register pain in any form until about age 5, so to teach him they used to get a ‘drs box’ & pretend X-ray machine out if he fell or any other child fell and role play with him but all that’s done is turn him the other way!

He now wants an X-ray / ambulance / calpol (for a tiny scratch!) he deliberately chucks himself down on the floor and asks for medicine etc, he says to me, mum why do you always call me a drama queen

The getting angry at getting hurt, I don’t know much about it relating to your ds trauma background but I get angry if I hurt myself stub a toe and I’ll shout every swear word under then sun. I really don’t like hurting myself it infuriates me.

Sorry you were reminded life isn’t how you imagined it to be at your stop off

Ds did hit his head recently and responded by biting me and ferociously kicking me. As though I was to blame though

That sounds interesting danni. I bought one called The Rested Child. I thought it would be quite graphically laid out but it’s very long and wordy. Hopefully there will be some good ideas in it. Ds is actually sleeping until 5 again but it’s only a matter of time.

I have a couple of social worker friends and they are lovely and very non-judgmental and supportive too.

dimples I’m glad your holiday had some positives. No idea about the trauma/injury thing but it’s certainly possible isn’t it.

We’ve had a great summer so far though ds’ behaviour has deteriorated with a game he’s currently playing. He gets very frustrated and angry when he can’t do it. He has been warned that it’s going to be put away until he’s older if it continues. He usually watches walkthroughs on YouTube but for some reason is refusing to do it for this level so he’s not even helping himself 🙄

Oh dear Danni that school strategy seems singularly unhelpful! Yes, DS seems v angry with me when he is injured. I feel like if I trip/stumble but manage to save myself from falling I feel happy/relieved whereas he is livid. I think it is that loss of control which is scary for him. We're starting sensory integration therapy in a few weeks if the adoption support funding comes through so I am hoping that may help..

Open glad that DS is generally on good form and sleeping better.

I borrowed 'My Hidden Chimp' from the library to discuss with DS but I think that it is beyond his understanding.

We have my hidden chimp and I remember thinking the same when I got it. I need to revisit it. I’ve read his adult book which is interesting, as is the whole brained child which is about the same thing.

danni I downloaded your book so am reading that alongside the rested child which I’m liking so far. No magic ideas yet, it seems to be setting me up for acceptance that ds just doesn’t need as much sleep as I would like! 😬

Saturday night open ds went to sleep at 9pm he woke up at midnight and didn’t go back to sleep until 8.45pm last night!!!!

I didn’t have any sleep whatsoever as i didn’t go to bed until 11.30pm Saturday night as I’d been catching up on love island.

He was awake at 4.30 this morning.

Have you heard of chloral hydrate? They can prescribe that for sleep issues along side melatonin, I’m going to enquire at our psychiatrist appointment, it’s getting really out of hand with ds I’ve been keeping a diary and it’s more often than not.

I’m just writing this laid on my bed and ds has taken my pillow cases off put his legs in one and another over his head, whatever as long as he’s quiet!

That book was not bad open I finished it now but those strategies just don’t work with ds.

Just a quickie, sorry I've been quiet on here but I'm reading...

Magrat - that sounds a super successful party! Well done to all!

Dimples, I'm glad you had a lovely break (ours Thursday). One thing I've observed over the hols is that there are a fair few kids acting out...(and that is massively understating some of what I've seen!). I'm sure some have SEN but I'm also sure a lot don't. Its made me feel a bit better. Not just me/us.

Danni, I'm a technophobe so can't attach the thread but I started one 6 months ago or so called "Melatonin not working, I'm on my knees" (something like that). A lady replied saying she had been to France with her DS and he had been up literally 12 til 6 every night, she went to GP in tears and yes, they prescribed something stronger, short term, to get him back on track (it worked). I can't remember if it was what you say but it was like something to re-set his system. Have a look if you can. Also, if the GP can prescribe it its not another mammoth wait...

Had a telecon with DS's pediatrician Friday and did discuss this - Danni, I think you know this already, but she was on about receptors stop working effectively when melatonin is given all the time and you must have a melatonin holiday ( I can't write what DH said when I told him that, its not publishable on MN). Only other things she said were try and push to a later bedtime, increase melatonin, but first take the holiday as it would then stimulate his receptors to be more reactive to the melatonin when he did start to take it again....