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.

Boundaries definitely

I have an AuDHD DC. We are firm. If they wanted a lift and weren’t ready by X time we would go without them, and they know we would. We give fair warnings that we leave in 30 mins, then 20, then 10 etc, and if they aren’t ready then that’s down to them. We always follow through.
There is a fair amount of pre warnings for everything i.e brush your teeth now so you then have X mins left to do….whatever. We always say plenty of time in advance what needs doing and what the consequences of not doing it are such as do X & Y by this time or Z will happen (generally play station controls or phone get confiscated). I’m not saying there are never melt downs (I’ve had doors kicked in and a TV broken over the years!) but we just don’t pander to them. It can get frustrating, on both sides, but know how important it is to not let their needs dictate everything or they will find life awfully difficult going forward. We did have a rough few years between 12-16 though, but it has, thankfully, improved.

I know CAMHS in our area ran parenting courses aimed at helping parents of ADHD DC, that was hugely helpful, have a Google and see if there is anything similar in your area. They will be able to help you with boundaries.

Yeah, I know. We do have boundaries (I think??). But efforts to implement them around the bedtime and morning routine lead to explosive conflict (and often ultimately past-midnight meltdowns). Someone once described it to me as if you have the inflexibility of a rigid boundary meeting the inflexibility of a ND child, you get a volcano. That has been very true in my experience.

So we took a more flexible approach and that's worked well for a while. But now DD seems to be pushing more and more/ more demanding and the result is that DH and I are broken. And I guess DD still isn't 'happy'...

Literally feel stuck between a rock and a hard place. Or maybe I've given an inch and she's taken a mile? I literally do not know anymore whether I need to be more flexible/ understanding ('roll with resistance') or more hardline.

We have tried that! The thing is that we don't technically NEED to leave at X time for our sake. DH and I both WFH to our own schedules. So it's not like we have to leave at X so I can get to work. So it feels like a petty game of our wants vs her wants.

The time warnings also stress her out (she feels nagged) and lead to conflict/ shouting.

Maybe we just need to lay down the law and accept that they'll be a few weeks of horrible shouting and meltdowns but that it will make it better in the long run?

And I've read/ watched so much about parenting ND kids. I think I'm pretty clued up (e.g. about low demand, etc). I'm just so, so burnt out and resentful. So it's an emotional thing as much as anything.

What is the full bedtime routine at the moment with timings, what is she doing and what are you doing?

My son is not a preteen but he is 8 will be 9 this year and has been diagnosed ADHD since the age of 6. He started medication this year as he was not able to regulate at all even with us putting boundaries and routine in place. Routine had been crucial since he was like the age of 2.

He would hit me, my partner (I split from my 2s dad), his younger sister who's 5 and there was a risk to mine and my current partners daughter who's now 7 months old. Morning routines before school were a nightmare throwing stuff down the stairs at me, saying he hates us trashing his room. I don't love him Etc. At school hitting other children throwing stuff etc. Even stuff they had in place at school was no longer working. I've always kept his routine the same and it was becoming unmanageable with his meltdowns

Me and my partner would argue. We wouldn't get time together because as I stated below he wouldn't allow me and my partner to have time together on the weekends his meltdowns would last for hours so by the time he'd go to sleep the Saturday would be gone and we'd give up and go to bed. On week days his meltdowns would carry on until my would go to work so I wouldn't have time with him then either.

If she's really struggling with your boundaries and routine maybe medication could be an option for her? They monitor my son really well. And honestly he's doing fantastic on it. Meltdowns are few and far between he's thriving in school. I'm not constantly on his case all the time.

Anyways he was having massive meltdowns at bedtime throwing stuff down the stairs at us. We set boundaries that both him and his sister were to go to bed at X time on school nights and then he knows at weekends he gets to stay up a little later if he allows me and my partner to have our time. So he goes to bed 8.30 on a school night to wind down he's allowed to read books. Colour, draw. Mess about on his DS then by 9.30.10pm he's usually asleep.

I've made it clear if he doesn't co operate or he's mean I will take a privilege off him that he has during the day such as watching TV after school or playing on the Nintendo Switch.

Is there something that regulates her that she could do to keep her mind occupied before bed ? Then state that she allowed to do this for so much time. You'll then say you can sit with her talk about her day. That way she gets some time with you.

if she's persistent it it escalates don't argue with her just walk away. As once a meltdown happens they don't really take anything in. I think it may take some time but stick at. Maybe speak to GP see if there's anyone they can refer you to for help?

Before now my son would not like that me and my partner would be downstairs watching TV together and that he'd have to go to bed and we were staying up. Meltdowns would happen he'd be up and down the stairs shouting abuse at me. He would want me to sit with him or he would only go to bed if he knew I was in my room. Now he's happy for me to tuck him in, talk about his day to unload and maybe have a story time on his Nintendo DS before he goes to sleep.

sorry if my reply is a bit jumbled x

With regards to morning time keeping, having separate alarms and a visible schedule is a great idea. One alarm for getting up and then X amount of time for having breakfast, another alarm to notify its time she should be heading up to do teeth and brush hair etc, another alarm for a 10 minute warning before leaving the house. All written clearly on a chart somewhere so she can see a tick list of whah she needs to do each morning and it should help with routine and time keeping.

Evening times find a compromise of which tasks she’s willing to pick to do alone. (Get pjs on, brush teeth, read etc) Tell her she can pick 1/2 things that she can have a parent do with her and the others she needs to do alone or compromise on having her read in bed alone for 10 minutes and then have a parent join her for the last 10.

Are there things you can incorporate into her bedroom to make bedtime a more Inviting/relaxing time? Projectors for the ceiling, specific music, audio books?

Have chats with her about how as we get older we need to learn to be more independent and self sufficient and have some goals written up that you both want to aim for. Take it slow and steady and focus on one task a month.

We are in the same situation. I would suggest posting in the Autistic Girls Network Facebook group for support. Have a look at mirroring to help your daughter complete tasks. I would also suggest she is burnt out, likely from school and this is how it's manifesting itself. You would need to implement an extremely low demand approach with her if that's the case.

Roughly:
8.30pm upstairs (we have to chivvy her to get up there, we need to go up with her)
8.30-9pm: fannying around in her room, winding up her brother (sometimes) while putting on her pjs and takign off her earrings, etc
9-9.15 in the bathroom (we have to make sure she doesn't take a book in there with her, otherwise she'll be in there for 45 mins)
9.15-9.45 sat at her desk doing drawing, etc. This is something she needs. She likes DH or I to sit with her for a bit, but it can be for 5 minutes
9.45-10 getting into bed (involves specific routine of it's own - lighting candles, taking her melatonin, dimming her lights, etc etc)
10-10.15 reading in bed
10.15 try to get her light out. She negotiates more time.
10.30 actually get her light out. Either I or DH sits with her for 5 minutes in theory, but always ends up being at least 15 because this is when she wants to talk about her day (and attempts to shut that down lead to conflict)

It can be later or earlier than this, depending on how early we manage to get her upstairs (which itself is impacted by things like after school activities and anything else that might be going on in the evening, etc).

Add into this, trying to wrangle younger brother in to bed (rooms are right next to each other). He's easier, but still requires management between about 8.30 and 9.15.

The problems are:
a) it never goes to plan because she gets 'stuck' at all/ every point (transitions are hard) and needs to be nudged/ prodded/ nagged to get upstairs/ get into the bathroom/ get out of the bathroom/ actually start sitting at her desk/ ETC. She also wants us around at various points. So we can't just send her up at 8.30 and then come back at 10.30 to sit with her.
b) she gets super upset if she feels she doesn't have enough desk or bed reading time (because those do regulate her). BUT any attempts to explain to her that if she wants that time she need to go upstairs earlier/ not fanny around so much/ etc just don't register. It's like she understands it but can't actually DO it. Essentially, we have realised, it is a 2hr process from coming upstairs to her light being off/ her being settled. And any attempts to make it shorter just don't work.

My best advice is to stop attempting to rationalise and discuss with her, particularly at times of high stress. This is the single biggest thing that helps with some of DS' completely OTT reactions. He'd be yelling and stressed, and I'd start to get stressed ro cross and would shout back or try to make him understand, but he couldn't/wouldn't and it would all escalate.

So around abotu the point you're at now, I tried vey hard to stop that. He's 14 now. Remember, boundaries are not about trying to change someone else's behaviour, they're about being clear on what you will/will not accept and how you will react.

So if DS is being irrational and accusing me of things now, especially in the heat of the moment, I don't engage. I say, "DS, that's not true and I won't continue this conversation while you're accusing me of ridiculous things." or similar. Then I walk away and/or keep repeating myself if he comes back.

I DO try to mitigate things going wrong. For example, I will quietly sort out breakfast or pack his school bag if I can see that he's got behind and is stressed/ not coping. Yes, he SHOULD be doing that, but sometimes, it's easier and better for all of us to head that tantrm off at the pass.

Bed time, in a calm moment, I might say, "I'm very happy to stay with you until xx time, but if you're not in bed by then, then that's on you." Having said that, frankly, on the advice of our doctor we've largely just led bedtimes go. he goes to bed when he is ready. I HATE it. But there is no denying that the house is calmer and we're all happier and, mostly, he does seem to get enough sleep.

Thanks for this. Sorry to hear you're having a tough time too.

Yes, there's stuff that regulates her that's built into her bedtime routine.

If we walk away from the conflict at bedtime she will literally stand at her bedroom door and shout (this is often at e.g. 11pm), waking up her brother. Threats to take things away just add fuel to the fire.

Medication - I'd read that it's not so advised for AuDHD? In any case she was diagnosed privately (massive waiting list here) and our GP won't do shared care with medication and we can't really afford to medicate privately (many £100s a month). But I have been thinking about it recently and wondering if we should at least try it.

I'm the Mum of a now 14 year old ND daughter. I'm also diagnosed ND myself so it's been a lot of trial & error BUT what I've found works are:

• break tasks down into one step at a time. It takes ND brains far longer to develop 'habits' than an NT brain.
• we use visual reminders for EVERYTHING! Just gone through mock/end of year exams...I got the exam timetable from school and made a big week by week sheet & then we added revision/hairwashing/eyelashes (don't ask!) so she could easily see what that days 'task' was.
• morning routine is all about time reminders...ours start at 6am then 6.30, 6.45 & finally 7am. Evening has the same.

-build in 'rest points' across weekends/eve. Time to process the day in the best way for her.

I'm not going to lie, it has been very hard to get to this point. It's just the 2 of us at home & we have adapted our home to fit our ND selves. I know that's not possible in a household with other children & another parent.
I've had to stand firm on boundaries surrounding lifts/offering my services as the friendship taxi driver etc and we've had fallouts but, apart from the usual teenage angst, we're doing OK!
Good luck x

Thanks for this.

I know I'm sounding defeatist, but we've tried all this. Alarms we tried when she was much younger - they just hugely stressed her out.

There are so many lovely things in her room that she already incorporates into bedtime (candles, lava lamp, etc).

She absolutely can do things like pjs, etc on her own - but the problem is that she gets 'stuck'. It's probably a time-blindness thing. But would spend hours at her desk drawing if we didn't remind her she needed to get into bed. Ditto any other 'step' in the bedtime routine

That reads to me as if she is functioning at a level of dysregulation that is impacting on daily living. It's possible that her window of tolerance is used up by everything she experiences and copes with at school and afterschool activities.
I'd start with looking at school and seeing if her needs are being fully met or if further accommodations are needed. The expectations at school increase (social, academic ,independence etc.) and you may be experiencing the fall out from that. She's seeking regulation activities but maybe they're not enough to counteract the dysregulation from school. She is probably less likely to express the dysregulation at school so you will see more of it at home. School may not be aware of her being overloaded at all.

I didn't know about that group. Thanks. I'll join.

I suspect you're right about being burnt out. There's been a huge amount on this last week too, so she's definitely used up all of her 'spoons'.

I do get that. But I struggle with the demand that going low-demand on her places on me (I'm burnt out too). And the rudeness we get from her a lot of the time when we're doing stuff for her.

Great post, everything @MageQueen has said. Once my daughter has got herself spiralling I know thst there is no way yo reason, take a step away & allow her, and you, to breathe x

Thanks. This is really helpful especially about the not engaging in the conflict (I find that very very hard. DD's behaviour triggers me massively - something I'm working on in therapy).

The bedtime thing - we have tried saying - exactly that, but then she just gets so upset and insists that she needs one of us there at lights out time. Then we just get into this endless round-and-round conversation about what she wants/ needs vs. what we are able to give her. I actually don't really mind what time her light goes out so long as she's able to function the next day. It's the fact that we are required to be with her WHEN her light goes out and that is often a) unpredictable when it will be and b) when I'm trying to go to bed myself

To add to my post above, I do think you n eed to consider the meds. I fully appreciate ehow expensive it is - it's CRAZY and our doctor stopped doing shared care about a month before we finally got the dosage right. I cried.

I also think that those reminders can be built in re bed time. So, for example, if this was me, I'd just be poping in to give her that "five minute" warning, while Im overseeing the younger one's teeth etc. Alarms also did NOT work for us ever, just added to the estress so I totally hear that for you.

I'm also going to reiterate my point above about letting her tantrum without trying to rationalise or argue with her. They can't hear the rational argument in those moments. It is better to simply let her burn out. I foudn that so so hard at first - DS was so genuinely distressed - but actually, I've found that over time, on some level he seems to realise what's happening so he calms down much quicker and we can get on with our day accordingly.

you're right. I can TELL she's at a base level of dysregulation by how quickly her bucket overflows and the increase in accusations of us 'being mean' 'not being nice', 'making her feel bad', etc.

I'm not really sure what school could do? She says she doesn't want or need any support there. She goes to a small, nurturing and pretty low-stress school. But maybe I need to have a proper chat with the SENCo...

Ok, I'll talk to DH about meds. The cost is insane though, and we have money worries at the moment (that's obviously adding to my stress bucket!).

Letting her tantrum. Ok. Maybe we need to try that more. I think we've tried to offset them for DS's sake (it's so horrible when he's crying because she's shouting at 11pm and has woken him up). But actually off-setting them a) sets me off and I end up shouting at her and b) doesn't work anyway.

I just can't bear it when she's shouting her head off about how much we don't care about her or how mean we are because we've left her alone. Or she's just sobbing in her room. It's so fucking heartbreaking. And also enraging.

There’s also a great FB group called ‘Parents of Autistic Girls UK’ which I find really helpful.

Your dd sounds just like my dd. She is 11 and leaving primary school this year. We have the long drawn out bedtimes and DH & I spend no time together as a result. The bedtime thing is very much dictated by how well she is coping at school etc. If she’s had a bad day then it’s game over. It’s particularly difficult at the minute as the end of Y6 has been a nightmare with all the different activities and changes going on, so she’s so disregulated all the time.

I am also exhausted as I feel like I spend my whole life bending over backwards for her and it’s still not good enough. I genuinely have the patience of a saint with her and even I show even a slight bit of frustration then she thinks I am extremely angry and it turns into an ‘I’m the worst daughter/person ever’ type of meltdown, so I am exhausted from masking my frustration and playing all gently gently 24/7. But you have to cut yourself some slack as we all know tough love absolutely does not work with kids like ours and it sounds like you are doing your best.

Sorry I don’t really have any advice. But just wanted to show solidarity.

Just one more thing, sorry to keep coming back but it's because I SOOO get this. I know nothing about AuADHD, but so much of this behaviour is recognisable in DS.

Re the bedtime routine - I completely and totally get that each of these things calm her and help her to regulate. BUT, I also know that the more copmlicated a routine is, the more difficult it actually is for DS. Is there a way to combine any of the steps?

So, for example, DS now routinely showers earlier in the evening, which means his bedtime routine is really just about brushing his teeth, without having to change and think about washing his face etc.

Can she light the candles etc as she's getting ready for drawing - so this atmosphere is created earlier. I'd also be suggesting she takes her melatonin BEFORE the drawing stage.

The 30 odd minutes for drawing - does it need to be that long? with DS, that would start to get into the place where he just wants to keep going. Can you cut it? Or, be more proactive about warning her the end slot is coming? eg after 15 minutes - "right, bed time in 10 minnutes.... " In bed, with book - five minute warnings (build in negotiation time).

DD is not, as far as I know, ADHD but I suspect she has a few traits. There is no doubt whatsoever that if I have to stop her from getting too INTO anything she's doing pre bed. 10 minutes per activiy max, otherwise, the fact that she is actually getting rady to bed escapes he rmind and is a complete surprise to her!

I would try to leave drawing as the last step after pj and washing teeth etc. Sit with her 5 min then leave her to draw and turn off the light herself when tired.
Not allowed to come and disturb you after pj and teeth are done.

Also agree about routine being too complicated. Simplify and combine steps

Oh my goodness yes about showing any frustration. It leads of accusations of not being kind/ nice or being mean here. But we really struggle not to show it. Because it is fucking frustrating. That's what I meant about impossibly high standards. She has it with friends too - she castigates them for doing things she does herself and it leads to lots of issues

The end of yr 6 was such a rollercoaster for us too. It's so much for them to handle and DD had some tough times over the summer as a result of the fallout.