to be struggling with 11yo DD (suspected ADHD and/or ASD) and shitty family dynamic

[HippyKayYay]

I know I'm probably not BU, but maybe I am and I just need to (wo)man up? Sorry this is long. (TLDR: ND tween is making family life toxic - will it ever get better, if so how?)

DD is having assessments for ND (ADHD and ASD). She's fundamentally lovely - kind, eager to please, generous, caring, creative. But she's also, and has always been, very demanding (of us) and 'full-on'. That manifests in lots of way - talking a lot, interrupting, asking a million times about future arrangements, wanting things 'just so', feeling hard done by, feeling left out/ left behind, complaining (oh, the endless fucking complaining), telling us the same thing multiple times, telling you something you've just told her, needing to show/tell us everything she is doing/ has done, holds grudges. ETC. After 11 years of it I'm fucking exhausted.

Unsuprisingly, things got tougher when she went to secondary. She started having meltdowns at bedtime (never had this before). She doesn't go to sleep until quite late (despite our best attempts), she often kicks off at lights out (waking up her younger sibling) because something 'isn't right'. She can be argumentative, explosive and downright rude to us if she's disregulated or very tired. Trying to put a plan in place with her is like trying to lasso smoke (I think due to the way her mind works and issues with executive functioning). As a result, despite our best efforts to put in boundaries, telling her she can't kick off at 11pm or scream at us in the morning because of <insert whatever it is that day> it doesn't actually change her behaviour. I often dread her coming home from school and utterly dread getting her to lights-out time. DH and I have no evening. It's worse than when the DC were babies/ toddlers as now DD is awake until 10/10.30 demanding our input/ support/ attention.

DH and I are utterly utterly wrung out and really really stressed a lot of the time. Her 9yo sibling is increasingly anxious and unhappy (in part that's their personality, but also due to the amount of shouting and arguing and being woken up at 11pm) and is starting to school refuse. The atmosphere at home is often toxic and we feel like four people individually struggling to keep our heads above water rather than a family unit. We can't seem to do stuff all together because the DC start fighting or DD gets hyper and things get out of control. And also the DC just aren't into the same stuff. We can't even do family movie night anymore because we can't find a film they'll both watch. They are both incredibly stubborn.

Has anyone been here and can tell me how/that things get better? How can we make family life more harmonious? Once DD's assessment reports are in I can look into more support for her (counselling, or school-based stuff). Younger DC would benefit from therapy, I think, but point blank refuses to entertain the idea. I'm in therapy (have been since I had a breakdown about 18 months ago). DH is stoic and just keeps going.

I don't want this to be my (family's) life but I don't know how to make it better. :(

Yes, she's currently being assessed for both. We're halfway through the assessment process now

I hear you. But I don't want to give up hope of being a family. Our life is already mostly 1:1 with DC separately and its making us increasingly fractured and it sucks.

Thanks for the book recommendation.

Yup, I've read up on rejection sensitive dysphoria and have told DD about it to help her understand why she struggles so much with feeling rejected by friends. It has helped a bit.

I don't really have anything practical to add ,but you sound great op. I was this child in 1979, but I was just called: weird , awkward, obstinate, anti social and many other things. My parents couldn't deal with me, and the transition to secondary school was horrendous I desperately tried to mask to fit in although I didn't know I was doing it at the time. I haven't had a great life due to not being able to keep regular hours amongst many other things, like your daughter I'm still buzzing at midnight. You are helping her massively and I hope the suggestions made by others will be good for her and your family.
Meanwhile I at 57 am only just realising the reason I don't fit in is because I'm Nd, trying to find the courage to get assessed. Good luck.

What do you mean by "kicking off"?

I know it's really hard, but sometimes you have to stick to your boundaries. As you said, this is a rational solution. Explain to her earlier in the day, when things are calm, that this is what you are going to do. Remind her again when you tuck her in, and tell her you won't be coming back because you need time too and you are going to go to bed/read/watch tv now. And if she "kicks off", ignore the behavior.

All ASD children are different, and it tends to be a bit of trial and error.

What made the difference for me was the realisation that my Mental Health had taken such a plummet, and the whole house was under some sort of cloud.

I had to prioritise myself, which meant learning not to get angry and annoyed / fustrated.

“it is what it is” became a stock phrase. I developed a much better relationship with her, which I think was key.

Don’t get me wrong, we went through some horrible times, but all much improved over the last 18 months

We did a mindfulness parenting course which really helped.

See above for descriptiosn of her kicking off. If we didn't have a younger child I would leave her to it. But when she starts screaming at 11pm she wakes her sibling up, they get really distressed and can't go back to sleep, they are then a wreck the next morning and it is exaccerbating their anxiety and school refusal.

Thanks. I am trying really really hard to not get angry or frustrated, but a lot of her behaviour is very triggering for me (genuinely, not in the way millenials use that term) and spirals me into all sorts of problematic behaviour/ responses of my own. I have been working on that a lot over the past year, and therapy has helped me a lot to come to terms with my own childhood and feelings. But fucking hell it's hard! Even DH, who is by nature a calm and non-flappable person, is absolutely at his limit with all of this and struggling to cope with it all. So I don't think it's just me (but it's definitely harder for me).

Does she take medication for autism or just adhd?.

@femfemlicious there is no medication for autism (that I know of)

Massive hugs. Can bits of the routine be moved earlier so there is not so much going on at bed time? Eg brush teeth after dinner / last snack, so that doesn't need doing again. PJs on at some time well before bed too. Ditto packing bags for the next day etc. Basically anything to lessen the transition from awake to asleep, and reduce the number of chores that have to be accomplished before bedtime can be achieved.

[Edited for typos.]

DD got put on Sertraline, which made a huge difference

You can still be angry and frustrated, just don’t show them, I found silent shouting in my bedroom helped.

You aren’t in your own .. I’m helping a friend of mine atm, who’s 10 year old DD is the same. It’s hard.

I sometimes wish there was a medication that would make my daughter zombie like for a period so I can get a break🤕

have you at all tracked the type/intensity of the “kicking off” and other behaviours? At 11 hormones are ramping up and I know my ADHD is screwy about a week before my period and my ADHD meds need topping up at midday if I am to survive. Also generally teenagers are very teenagery even when NT so some of it will be that - not particularly comforting for you though.

I would also look into delayed circadian rhythms, personally I’m either 8pm or 2am bedtime - anything inbetween and i literally struggle to settle and need to almost shushed like a baby. (I did have quite a bit of success with Pavlovian training with a specific song as the last thing I would listen to before sleep and eventually I could use to trigger sleep at 10pm. (It was a very old song so never heard on radio and I specifically keep it for the use of triggering sleep)

The urge to tell you stuff and repeat is bloody tedious, obviously you know that ND people have atrocious short term memory and therefore we think of something and it must be said before we forget. Can you redirect this to a kitchen chalk board wall where she can leave you notes and you leave notes in return. This won’t fix everything but it may reduce the behaviour down to a more manageable frequency.

For future events my I suggest a family diary or similar that your daughter can access and look at, this need to know what’s going on is a threat scanning behaviour, she’s living in an environment that is alien and hostile and this is a survival technique. The problem is there are no sabre tooth tigers anymore and so she is probably substituting those for perceived threats - change in routine etc. Having an autonomous way of dealing with the threat may be helpful to her. I would suggest a hair dresser appointment book so your can time block out and annotate getting ready, travel and event time so she can differentiate between the different stages and get more of a step by step understanding. Yes this is more admin for you but you will also be helping her build an ability to sequence and anticipate getting ready to leave on time. ND people generally live in 2 time zones: now and not now which makes judging time insanely difficult.

The repetition is comfort and a stim, I do it and didn’t realise for years that when I was bored and or frustrated by what I considered oppressive environments I would say “let’s all go to the zoo for chips” it became a mental reset for me and frankly got me odd looks in the office. Perhaps here fidget toys could help and maybe if she agreed to whisper her stims or something that could again lessen the impact.

For the record I am slightly uncomfortable with the phrase lessen the impact that I am using, it’s a fine line between masking (utterly draining) and being home and safe and being able to express your authentic self. Obviously though you are a family unit and you need to be respectful of each other so this is the point you need to understand and work towards.

When she shouts I don’t know - the poor lamb doesn’t, I don’t still know some days why I do or feel how I feel until hours/days/weeks later - then I realise “oh a label was itchy that’s why I was in a rage!” There is little to do here other than try a feelings wheel but even that may be hit and miss.

Ultimately strategies will work for awhile and then stop this is normal and you’ll probably need to figure out a few different options and cycle through them so that they don’t become fatigued and stop working. For example I use habattica app as it gamifies tasks but this only works for a couple months before I need a post it note wall or a new note book to list everything in. I definitely recommend the non sweary version of the ADHD anti planner by Dani Donovan (it’s about £11-12 on Amazon at the moment)

Depending on your personal view of having one in the house you may also find an Alexa or similar helpful to prompting behaviours, they are often found to be less triggering and more low demand than a human. I find my Alexa so helpful and way less naggy than a human, even if you message her via it to do something.

Good luck!

what i find helpful is to make statements here is an example. Here is a trivial example.

task: your socks being unrolled and in the wash basket
problem: you don’t you leave them rolled up and i get cross then you get in a huff and you promise todo it next time but then don’t
The solution cannot be: i sort it for you
I suggest: if they are not in a fit state to wash i will put them in your door way and then you sort it when you next go to your room. But i won’t mention anything and you can sort in your own time
the consequence of this is: if your socks (particularly games socks of which you only have one pair) miss the wash then this will be your problem.

Approaching problems like this has really helped DS2 start to find his own solutions and methods going forward. Would something like this work. Collaborative solutions is a skill they need to learn.

I found removing flash points really helpful.

but IAmNeverThePerson and it would be unwise to try me so working on methods that help is in everyone’s best interest.

If ADHD is in the mix, you have a few options.

You also have SSRIs ( anxiety and depression) which helps mood regulation.

Sometimes medication is the only option left. People will judge. Let them live it and they will change their mind on that one quite quickly .

Poor you. We’ve been there. At one stage we seriously considered splitting the family and one adult taking it in turns to be with the younger child in a rental nearby, so the youngest’s childhood wasn’t ruined by their older sibling.

Have you tried a weighted blanket, stretchy cocoon thing? Our school has an excellent network of parents whose kids have additional needs , a WhatsApp group. Anything like that for yours?

Oh, I have one of these.

I found The Explosive Child helpful, not for solutions but because it cheered me up to hear about other parents suffering too!

A book I did manage to apply some of was 10 Days to a Less Defiant Child (Bernstein).

NVR was helpful. Yvonne Newbold online has good stuff. DH and I had some one to one online sessions with New Leaf NVR.

Play therapy helped DD a bit but she was younger.

Accept that your family life will look different to others. See more of friends and family who get it and less of those who don't.

Play a lot of Classic FM or any other station you find calming.

Sibs is a charity you might find helpful.

OP I was you a few years ago DD15 is a lot better, medication for ADHD on school days and sleeping a lot better for the last couple of years.

Small class sizes definitely helped too as she wasn't so exhausted from the noise. She is alot worse when her period is due, hormones and ADHD do not go well together and she now has a period tracker so she can make sense of her "spikes"

Mine is a bit more PDA I guess so the tricky thing is homework and revision now we are in mocks as I also do low demand parenting. Structured tuition has been my go to for that problem.

Meltdowns are less but still happen, I've always deployed the hug strategy (ASD means she sometimes pushes me off but that's ok) I use my calm voice at that point "you're ok, you're ok"

And I know it's really grating..flap my duvet, close the drawer, can't get comfortable...I just laugh or say ok as I damn well know it's a me thing.

So tough though OP.

My 9 year DD sounds exactly the same and we are waiting for ASD assessment, I do sympathise and recognise the sense of grief over family life being not what you planned/wished for.

I second the visual timetable, and visual prompts for an evening and morning routine. Also...does your DD have any interests or meaningful activities. Our DD has just started Karate, which is really helping with self esteem, and the physical activity helps. She also loves climbing, so we try to go to the climbing wall regularly. It's bloody exhausting though and you feel like you always have to be 'on' and planning one step ahead!

@HippyKayYay hi this sounds all really tough, my dc has autism and adhd. It’s the adhd that makes them act in similar way to how you’ve described your daughter, no real advice as I’m going through the trial and error of it all for us too, but adhd medication has been a game changer for us and them, things are still rough but getting the adhd outbursts under control has been really helpful. Good luck, I know what youre going through and it’s really hard.

I have a 10yo awaiting diagnosis for adhd, daydreaming away at school but well behaved. She's irritable and grumpy at time and often very in our face/ fighting her younger sister.

Things we have done that work:

Low demand on difficult days ( end of terms, christmas etc) and low expectations. The transition from yr6- 7 is huge and not to be underestimated ( i work with kids)

Bedtime at 8pm, but can stay up and read/ listen to audiobooks as long as she is quiet in her bedroom - i usually turn her bedroom light off on my to bed when she's asleep. I've said i will get her some nice lights for her room for her birthday. Setting the scene with calm lights always helps.

Visual timetables eg for getting dressed, tidying room.

Loads of exercise/ physical activity eg walking to school is very regulating.

Loads of talking about emotions - using feelings charts and prompt cards.

Sounds like the lead up to bedtime building the tension.

Completely agree with the OT to look at sensory needs - look for sensory integration trained one. Or read the out of sync child first more information.

Lots of including her in decisions eg how can we help keep your room clean and getting her invested.

Good luck to you, it's sounds very hard and I'm dreading the hormones hitting.

OP has DD tried going to bed in a onesie? DD sometimes does this. If she doesn't like the feeling of the duvet etc it might help?

Thanks all for the suggestions. Some of this we've tried already (unsuccessfully), some I"ll look into.

We've tried the collaborative solutions things many times, and either they don't work (she finds it too overwhelming to talk through the options) or they'll work for a nanosecond. Sticking with things or following through on resolutions is, unsurprisingly, not something she finds easy.

It's so true the saying 'when you've met one ADHD/ASD person you've met one...'.

We have had the most success with a low(er) demand approach and I am working hard to be more consistent in that. But some stuff just does need to be done, some boundaries need to be put in place (e.g. bedtime, otherwise she's so tired in the mornings)