Am I expecting too much from ND pre-teen?

[HippyKayYay]

Parents of ND pre-teens how do you know where to draw the line between supporting them and pandering to them?

We do a lot to support DD (12, high functioning ASD and ADHD) in the mornings and at bedtime (two toughest times of day for her). But I'm feeling totally burnt out by it and that I will never be able to meet her incredibly high standards and unrealistic expectations about what we can and should be able to do for her. If we try to draw lines (e.g. if you want a lift to school you must be ready to leave at X time, so that we can get on with our day') it leads to huge conflict, accusations of us 'being mean', or 'why can't you just be nice to me?'.

Bedtime is a long, protracted affair that requires me and/or DH to push her through the various stages of her routine (otherwise she gets 'stuck') but being careful not to nag her (because then she explodes). Her bedtime is getting later and later, but she still 'needs' us there at lights out to sit with her. Suggestions that we no longer do so lead to major distress.

I've explained to her umpteen times that we can't give her what we don't have, that we have limited capacity, etc. She gets upset because she says I'm 'making her feel bad'. We go round in circles. Any attempts to draw hard cut-offs at bedtime can lead to massive melt-downs (often lasting until after midnight - we've had 3 in the last week). DH and I are knackered and have no time together at all in the evenings anymore. Added issue is she has a younger brother who gets very stressed out by all of this (expecially when he's woken up by her having a meltdown at 11pm).

So, yeah. TLDR: how do I put some boundaries in place around what support we give DD without making her 'feel bad', that we 'don't love her' and without leaving her really distressed? Because I'm becoming massively resentful about meeting her 'needs' (/demands), which are feeling increasingly unreasonable.

I know, it's so hard. One thing I would say is that if you cut it off much sooner, those tanturms might be much earlier too <tiny tiny silver lining?>

Re the money worries with the meds, I get that too. We had a tough period a yea or so ago and it was a nightmare. Now that meds are stable, we can keep costs down by

1. Buying in bulk - we get 3 months at a time which removes the repeat prescription fee and the pharmacy does seem to give a bulk discount and
2. we don't actually medicate all the time. Every day for school, yes. But on weekends and holidays he often doesn't take them. that is largely his choice but it works for me. I do insist over longer holidas that he takes them at least once or twice a week as there seems to be an emotional disregulation build up which I don't really understand but definitely experience. But it does mean that overall, buying 3 months at a time, I can do that rougly 3 times a year rather than 4.

Yes, fair point. It's a fine line between giving her enough time so that the activities do regulate her, but not so much that she gets stuck in them. She will have a firm idea of how much tiem she needs though and gets very upset if she doesn't get 'enough' desk time/ reading time.

Showering is a whole other thing that I won't even get into here...!

Attemtps to get her to change the routine usually result in 'but I don't like doing X earlier - I like doing it X'. Cue back-and-forth round-and-round negotations/ conversations. If I try to make it a hard line cue conflict and explosions. We really are in a 'her way or the highway' situation with many things.

Thankfully we don’t get the accusations of being mean etc, but for dd it manifests as her spiralling into feeling so awful about herself and she gets stuck in a loop of emotional self destruction.

But the high standards and expectations thing is what is really getting to me at the moment. She is such a perfectionist and has an idea in her head of how everything should be and how everyone should behave, and when it doesn’t happen the way she envisioned then it’s very bad. I feel like I am just put on this earth to make the impossible happen for her. And of course it’s barely ever appreciated.

Sorry I am venting now but I am sure you understand!!

Oh my goodness yes about showing any frustration. It leads of accusations of not being kind/ nice or being mean here.

and @discov am also exhausted as I feel like I spend my whole life bending over backwards for her and it’s still not good enough.

DH really really struggles with this too. I cope a bit better but reminding myself that in some ways, this age, especially with ND, are basically complete covert narcissists. Their brains simply haven't matured enough, combined with the inability to self regulate, means that they are hugely self centered, completely lacking in rational thinking (particularly when upset) and genuinely believe they are the victims. Also, all narcissists get their "supply" from the reactions of the people aroud them, even if they are negative. So you have to withdraw that supply.

It was so so hard in the beginning but the fights me and DS used to have regularly were SOOO bad. I would be upset, he would be upset, nothing would improve. And I find it so much easier now when I just say, "No, that's not true" and walk away. I know that deep down he knows it's not true - it's the very fact that he DOES feel so safe with me that allows him to have these meltdowns in the first place. But as he's got older, I've felt that I have to help him learn to manage it better but I can't expedct him to be rational. So I just have to refuse to engage.

But the good news is that I can SEE that he IS maturing. That some of that self absorbedness is starting to dissipate. That he IS learning to be rational in his understanding of arguments. That he is starting to be able to look more objectively at the situation and know that I'm not doing things to "be mean". I assume it's a long term process, but seeing those improvements today vs two years ago, gives me hope.

Also, I thihnk you said she's in year 7? It's a tough year - high school transition is hard. And it's a bloody LONG year. we tend to find that behaviour and challenges for DS are always worse from April-July. But, I'm here to tell you, that this year (year 9), it's not been great .... but nowhere NEAR as bad as the last 3 years. Things DO change.

I have an AuDHD child.

don’t bother talking to her about your needs. She is very unlikely to take it in.

if you want her to do stuff try framing it as:
this will give you skills you need (we used that for cooking, riding bikes, and getting to school independently)

my DD still has time blindness. Your DD will get stuck at various parts of her routine. This is part of the adhd.

meds - they are usually taken in the morning and then possible fast acting top ups in the afternoon. They’ll be wearing off by evening. The impact very much varies from person to person. They will probably help your mornings but not so much your evenings.

One thing jumped out at me is that she takes melatonin quite late. It take 1 to 2 hours to work.
I would be giving her melatonin at 8.30 before she heads upstairs. We also brush teeth downstairs to minimise bathroom flaff.

What happens if you remove yourself from the whole bedtime circus? At our house for our 12 year old, the non-negotiables are brushing of teeth and showering every other day. After that, once they are upstairs, what they do is up to them (we have no screens upstairs, so they can't watch TV/use phones etc). Reading/drawing/whatever as long as they don't disturb others. So only 1 or 2 demands, depending on whehter it is a shower day or not.

My son is also 12 and the transition to secondary has been very, very hard. It’s magnified his ND behaviours significantly.

We have built a very good relationship with the SEN department and he is spending part of most days in the SEN hub to reduce his overwhelm at school.

His morning routine is very supervised: up by 7.15, dressed by 7.40, breakfast then out at 7.55 for a lift to school. Bags and uniform are prepared the night before after homework is complete. He sleeps very heavily and doesn’t wake up to alarms so mornings are the flash point

After school there are two hours of decompression time, then homework and music practice (supervised), dinner, then own activities until about 8.30 (often gaming) when his brother goes up to bed (also autistic, and they share a room), and he feeds his fish at this stage. Sometimes Boy12 goes up, gets ready for bed and reads quietly until lights out, sometimes he watches one of his comfort zone programmes on tv downstairs.

he is upstairs and in bed by 9.30 BUT still finds it hard to get to sleep

we have a smart light/speaker in their room which plays sleep music and gradually dims from 9.00-10.30 with the reverse in the morning. This helps both boys

no screens in their room at all, blackout blind, window open a bit year round for fresh air

that’s our schedule and it mostly works for us but not perfectly

(Double posting, sorry)

honestly if the lift to school is leading to conflict I’d knock it on the head.

tell her that she’s a big girl now and it’s time to be learning some skills to help her in adult life and one of those is getting to school on her own.

does she walk or cycle or bus if she goes independently? Then you can frame it as you are helping her learn adult skills.

if she is walking or cycling then she’s good to go on her own. If it’s bus it’ll help you do a few practice runs with her but the reasoning of this is a skill you need is a lot more obviously true.

Play audiobook while drawing? My auadhd dc finds it soothing, he doesnt brother to read often just getting jnto bed to continue listening to his book

I’m just posting in solidarity really. I’m also exhausted of walking on eggshells around my ND family. I’m burned out of anticipating their needs and changing massive parts of my personality so as not to trigger them. It’s combining with my own perimenopausal rage. I just said ‘FFS’ to my kid yesterday - I didn’t even manage to suppress it. This was very wrong of me. But it’s very hard 💐to be a specific version of yourself. And even harder that no one in the family actually ever seems ‘happy’ with ‘eggshells’ me. It’s more like if I have my actual personality everything goes badly. It inevitably makes me feel like a really horrible person. Sorry that was a totally unhelpful reply.

@MummyYummyof3 you mentioned in your first response that your DS is on meds - can I ask which meds?DD(9) is newly on meds (concerta xl) but that doesn't help her in the mornings - she has a routine but as PPs have said, gets stuck in between tasks and needs constant help. Appreciate she's still young but keen to try to install more independence - if we nag, she shuts down and goes even slower!!!

Also my 12 is (helpfully) rigidly rule obeying which does make a difference in his compliance.

He likes loopholes though so home rules are carefully drafted

If we vocally remove ourselves (e.g. 'I can't spend the next 2 hrs sitting with you') then accusations of being mean, her getting stressed out, etc.

However, sometimes if we quietly remove ourselves (i.e. we just drift downstairs) it can work. Problem is my office is next to her bedroom. But I guess I could take my laptop downstairs.

Interestingly but not suprisingly in the school holidays it's all less fraught. We can generally just leave her to it. Albeit still needing to be with her at actual lights out time.

Ah, ok. We'll try it earlier

It woudl be walking. She'd need to leave home 45 minutes earlier. It does feel a bit mean when we can drive her to make mornings less stressful for her.

Not unhelpful at all. In fact it's really helpful to hear similar woes, becuase most of my friends have NT children so don't get it at all. And my mum thinks I'm too soft on her, I think.

Oh, and don't beat yourself up about swearing. I do it far more than I care to admit

That's good to know about her not hearing our needs. I guess we just need to stop trying to use that to get her to change her behaviour... It's definitely not working and I think a) makes her feel bad and b) adds to our frustration and resentment

oh yes, I recognise this. My sister has a lot of thoughts and opinoins that she thinks very very loudly!

I highly recommend ADHD Dude (no I don't get commission) - he has a great webinar on structured bedtimes, and also material on getting away from prompts, and helping with sensing time.

Seriously can't recommend it enough. Ignore everyone who says "it's not neurodiverse affirming" because what they mean is he actually teaches you how to get your DC to do something age appropriate.

Hi
similar situation with my daughter although she's a bit younger.
re the medication - depending on what she's prescribed, it may not be as expensive as you think. Mine is on two medications - her instant release methylphenidate (which has the biggest positive impact on her ADHD and executive functioning) costs us about £20 a month. Asda pharmacy are the absolute best for not adding mark up and sell it at cost price for children's private prescriptions. Her other medication was added later due to issues with eating and is more expensive at £80 per month. We've just managed to get shared care for both her and me, which will help massively.
Routines cause nothing but stress for our daughter. They do the opposite for her of what they do for neurotypical children. We have taken all pressure out of bed times and totally removed any idea of a routine. The bedtime routine, she associates with being told what to do, being on her own, being lonely, being in the dark. All negatives. As long as teeth are brushed twice a day, it doesn't have to be before bed (for us.) pyjamas/comfies are put on at some point after dinner but not as part of a nighttime routine. She can sleep in her joggers if that's what she wants, or shorts, whatever she chooses. She does a lot of sport so showers happen after that at the venue. Her wind down activity (drawing, reading, music, watching her phone) takes place in her bed so she knows it's a place to relax and she can do that until she falls asleep. She also takes one of her meds at night and we need to try to give that a bit earlier in the evening as she associates that with bed now and gets angry.
Could you try a light on a dimmer that gradually gets lower (then you aren't switching it off and taking away her control) and let her draw in bed?

I used Boardmaker symbols for morning and evening routines. We also did ‘show me 5’ where I held my five fingers up and she pushed down how many were done. I found it helped to not have any spoken language at these times.

Yoto in her room for settling to sleep. Melatonin 30 minutes before bed. Weighted blanket. Fairy lights to keep the room dim. Blackout curtains.

Check in times at specific intervals after ‘tuck in’. Saying, ‘I will check on you in x minutes.’ Sticking to that precisely.

Thanks for all these suggestions. I guess what reading these makes me realise is that the real issue is that I'm burnt out with it all and any/ all of her demands/ wants/ needs feel utterly unreasonable to me right now and if I push back we get into conflict that can often become explosive. Walking away or ignoring her doesn't work (she will accuse me or ignoring her or abandoning her).

How do you all cope with the demands and the just never-endingness of it? When she was younger at least she went to bed earlier and I had a couple of hours in the evening to myself/ with DH. Now I don't have that and I just feel completely wrung out by it. And how do you keep your frustration at bay?

Personal advice:

me and my then husband switched out.

I would often get to the point where I just couldn’t cope. I would then ask my thenH to pick up bedtimes etc for a few days just to give me a break.

she is presumably in the dog end of the school term at the moment. She is tired, you are tired. It’s not a particularly good time to introduce new things.

i’d suggest stepping back.

you say you WFH - get up early and go
out to a coffee shop/co
working space to do your work outside the house. She cannot argue with you if you are not physically there.

same for bedtime - ask
if DH can pick it up
for a few days and either go
out (do you have a dog that needs long evening walks?) or get a lock on your study door and headphones to watch your tv programmes through.