Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

She would still be too shy to do that I think @openupmyeagereyes - anything with a bigger audience is tricky (although she manages to do things that are just with her class). But I was surprised she agreed to talk to Year 4 and didn't seem worried about it. Definitely growth!

Hope DS is having an OK day despite waking up a bit tense.

Good news on the scan @dimples76 - really hope the meds are effective as for @carriebradshawwithlessshoes's friend.

Sorry to be a grump. Do any of you feel you just can’t do this anymore? There was a thread on chat recently about ‘how do you cope as a parent of autistic children’ and it was compelling but fairly awful reading. I’ve been waking up in the night thinking about a lot of it.

DSs adhd meds totally sent his sleep into orbit. Last night slept 8.30 til 8.45 then up all night. I’m in the office today, important meeting. Ended up having a screaming match with DH at 3am saying I just wanted him in a residential home. Fortunately DD at mums. Big argument about whose meeting was the most important ☹️.

I don’t know how you all cope with no sleep. I’m sitting in a city coffee bar now with a massive coffee just feeling crap. What really really REALLY winds me up is DS just laughs and screams his head off when I’m shouting. It’s like a fucking lunatic asylum. DD in those circumstances would have been bawling her eyes out and quite rightly so.

So I’ve come to work and now school ringing me to say he’s ‘tired.’ No shit Sherlock. I’m 50 minutes away completing a massive deal, what do you want me to do about it, exactly? Log off, say a cheery tally ho to my client who is paying me/ the firm a 200 k plus fee to collect my ‘tired’ child????

Very fed up.

To be clear I don’t get the fee, I should make that clear! My employer I mean.

Hugs @carriebradshawwithlessshoes
I hate the laughing thing too but I remind myself it is anxiety based because DS doesn't know which other reaction to go to. Just try to step away and breathe or remember a happy time and distract him with that. I know it can be hard. Your DS us just a child though and he didn't choose to be autistic.

A poster on the other thread said ‘if you have any career you might as well forget it’, I was thinking about that too all night. Sometimes I think that’s right.

Thanks Susan, you are right of course and glad the cats plodding on! Tomato soup and a bit of sun may have perked him up!

Thank you. I hear you about the career too. I worked really hard to get where I was and, in some ways, going part time felt like a demotion. But now I get to run my own service AND finish at 2.30, so it feels like I'm the one winning in some ways. Although I do miss the prestige of my old employer sometimes but in life you prioritise.
I think the cat is happy, if also extremely ancient!

carrie I think like it often.

Ds has broke up for 3 weeks now and my mental health goes off a cliff edge during half term. Especially one that is for the best part of a month! The summer holidays I’m a shell when he goes back.

I don’t have time right now to post but I will come back later

carrie I agree with Susan, your ds laughing doesn't mean he thinks it's funny. I'm sure it's an anxiety reaction, it's really common. Hard to remember that in the moment though. Last night sounds like it was really tough. Have his meds changed? An all nighter is hard for anyone, even a few hours helps take the edge off. I hope tonight goes better for you.

Ds has continued with whingy, emotional outbursts today. He's really tired, some days it just catches up with him. Mostly about TV/gaming of course. He has deemed it 'too cold' each time he's been outside today. I just tried to get him in the garden again and when I went to put some rubbish in the bin he locked me out of the house - rookie error, leaving the keys in the door. He wouldn't let me in and eventually dh came and opened the door, v grumpy as he's in a meeting. Sigh.

He's been into school each day but still not happy to be in the classroom for very long. It feels like we haven't made that much progress in two months.

That sounds very hard Carrie. I hope that the meds situation and sleep improves.

As far as careers are concerned mine is very much in the doldrums. When I had an interim appraisal in January my line manager told me that I need to be more disciplined about my research. I was so upset, I reduced my working hours further in August because of DS's challenges and I told him then that I was at breaking point. I am either working, commuting or with the children. I am lucky that the children sleep okay so I normally have 8:30-10:30 free each evening - I often have to work then to catch up on work missed during the day due to DS's appointments. I literally have nothing left to give but am constantly made to feel that I am not good enough. The most successful academics I know generally work way over their hours but as far as I am aware don't have children with additional needs and are mostly men whose wives do the majority of childcare etc (my line manager falling into this category).

Good luck with the hols Danni. Only 2 weeks here, fortunately. During our more difficult times I long for the weekend to be over (even though my job is not great) as I need a break.

On a happier note we have snow here so had fun on the school run this morning.

Thank you Open for your kind words. Like Susan in the cold light of day I know you are right. No they haven’t changed, they are the softer non stimulant option. The clinician said this may be a sign they are too low or even just kicking in now, it’s like no one knows.

Oh gosh I’m glad you got back in, that’s not your fault! Thank God DH was home! I think DS has taken strides from what you said before. It’s possibly good there’s a break now, do you think he’s still affected by the head butting incident? Maybe a bit of Easter clear water will help?

It’s good to hear the laughing isn’t just dS. It winds me up like nothing else. All my memories of DD growing up were her being traumatised/ really upset when I was angry or even when she thought I’d be angry which is to my mind an appropriate response.

Messages crossed dimples. Did you move out of private practice when you adopted or was it for other reasons? It sounds stressful. Could you do anything else like consultancy work for a law firm? In fact a friend who is freelance asked me recently if I could do some consultancy hours (and just take on what I want.) Obviously I can’t but it didn’t sound a bad arrangement.

Yours sounds more stressful than mine!

It’s really hard I find saying I’ll work PT or whatever because whereas that’s fine if I worked in Tesco and could work clear cut hours, in many jobs it’s not like that… yes, technically I work 3 days but I have a caseload that needs to be dealt with and that spills into the time it takes. Also I find I just can’t do my job if I’m knackered.

I work part time but I have a professional job, it's not in law to be fair, but it is possible. Could consultancy work for you? DH went that route and it's working out.

Ds used to laugh at stressful things too. The new development is to laugh at people when they get things wrong, which winds dd up no end! Also probably why he does it, to get the reaction.

I had to give up work. I was self employed in a creative industry. Looking after ds took up so much brain space it it left no room for me to develop ideas and create new work. I still don't have the Energy to go back but maybe will someday. I'm currently doing an online degree though part time which I am enjoying. But dimples I hear you on the research, having the children at home means I get zero done. I'm very much a morning person and by the afternoon/evening my brain turns to mush.

Ooo I haven’t posted my good news. I am wearing my work trousers that wouldn’t fit 3 weeks ago.

Bottoms up to the juice…

Wild goose change to 4 chemists with ds in tow to get my medication. One end of town to the other. Can’t not have it so needed to collect….. but not in stock anywhere ffs! Boots had my prescription 2 days already. Which has pissed me off as I always do it when he’s in school but they’ve messed me about this week ordering something (that now they can’t get nor can any other chemist!) so had no choice but to take ds with me since he’s off now.

Anyway, home now. Thank fuck. With no medication but he’s come home with bunny biscuits cheese straws and all sorts. I’ve just had to sneak downstairs into the kitchen to ring my gp to tell them there’s an issue with my current medication and they need to get me an alternative. Of course ds heard me from upstairs even though I’m practically whispering 😞 and he lost the plot. Couldn’t even finish the call and Dh isn’t home until 8pm and the drs is closed obviously.

How fucking difficult, I can’t even make a phone call! not like I’m ringing a mate for a chin wag, it’s v important.

I’ve just found my gp email and sent one and explained the shit show which is my life 🤣 so hopefully they can liase with me through email but Dh is working tomorrow 14 hours and I’ve got to try sort it with ds here.

Wouldn’t be bothered, I can say shut up ds I’m using the phone and that’s that. But you genuinely can’t hear yourself think, or hear what they are saying on the other end and visa versa.

CAMHS psychiatrists have both left and now ds doesn’t have a psychiatrist. Found this out this morning when I went to collect ds promethezine and mentioned his appointment coming up, I just wanted to know if they had arranged the teams meeting with his teacher and she said oh has no one contacted you? Ds appointments have been cancelled for the foreseeable!

CAMHS can’t now change ds medication or change the dose and apparently (they said this is nationwide!) they are looking up to a year for a new psychiatrist, the other two were locums and they are struggling to even get anyone temporarily.

They can keep prescribing exactly what he has now but the adhd nurse can’t alter anything without a psychiatrists say so, but they have none!

The manager of CAMHS was ringing me back today, hasn’t rung, now I can’t talk anyway because Damian is off school for 3 weeks.

So now I need her email aswell. 🤣

kill me now. Please.

Ds isn’t called Damian by the way, I was referring to him as the devil 🤣

Goose chase* not change.

dimples I’m pleased (well not pleased) your ds has been diagnosed and you have some answers, hopefully medication will help. Is he ok taking meds?

Carrie well done on the weight loss! I left the law long before parenthood. I got to my early 30s and found myself as single as could be, no prospect of children and in a career that certainly did not give me joy. I took a 4 month unpaid leave of absence from my job and bought a round the world plane ticket. When I got back quit my job straight away with nothing else to go to - even considered studying medicine but ended up as an academic. I would say being a lecturer is so much easier to combine with parenthood than a solicitor in private practice. However, one of my friends is leaving academia to become a tribunal judge (apparently they want more solicitors including non-contentious) and that appeals to me. Not now as I must complete my doctorate but maybe an idea for my 50s...

What is your degree in Liv?

DS doesn't laugh but he does smile a lot when someone shouts. His teacher was shouting at the class the other day and his 1:1 said that he was smiling away which angered the teacher further. His 1:1 says that she tries to take DS to do a job if his class teacher gets cross but DS is reluctant to leave - I think that he is potentially made both anxious and excited by it. It does seem like his current teacher is quite shouty

Oh no, Danni that is terrible. I really hope that you can get your medication soon and a proper review with CAMHS.

DS is normally fine at taking medicine. I am going to start tomorrow after school as the Dr says that initially it can cause drowsiness and an upset stomach.

Nightmare danni! Hope you can get it all sorted.

Funnily enough it's law dimples. I have no desire to be a lawyer though so I'm not sure what to do once I've finished it. It's nice to be studying again though.

Well done on the trousers Carrie!

That’s a fab story Dimples!!

How wonderful dimples, I hope that you can make your pt job work. Hopefully easier as kids get a bit older.

I always wanted to go back and study art history via OU. It could still happen I suppose.

danni can a family member come and watch ds so you can make some phone calls outside?