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. :(

I would look at private OTs in your area who can support with routine and structure. You don't need a confirmed diagnosis to access this. Therapy is well and good bus sometimes you need some very practical solutions and this is where an experienced occupational therapist is worth their weight in gold.

@Catza I don't know much about OT in this context (I know more about it in terms of e.g. helping stroke patients recover). DD doesn't display any obvious sensory issues... Would OT still help? What do they do in this sort of context?

OTs look at all aspects of meaningful occupation- they can help set up routines, they can assess for any sensory issues (even if it is not obvious to you, she may be struggling to self-regulate and sensory strategies are helpful in this), they can also have a think about self-regulation at night so she has something else to direct her energies to instead of "kicking off" at 11pm. They can work on sleep too. Literally, anything... I work in adult services so my knowledge of childhood OT is limited to sensory-processing disorders and mental health but I can't imagine it being very different to adult services except, perhaps, my client group needs less support with goal-setting. Once we set a goal, I can then work on solutions of how to get the client there. Doesn't matter if their goal is to tie shoelaces, climb mount Everest or regulate their sleep. A lot of OTs are also trained in positive behavioral support and this seems very relevant here.

@Catza that sounds amazing. DD enjoys having goals (reward-based motivation worked well for her when she was younger) and loves a to-do list. I'll look into whether there are any local to us.

Thank you

Have school suggested the assessments and what is her behaviour like there?

DD was diagnosed last year as her school picked up on the signs and spoke to me about it. Because they had seen her challenging behaviour at school they put a lot of measures in place to support her. I would recommend speaking to your DD's school and see if they can help

No, neither her primary nor secondary suggested assessments. Typically for a girl, she's fine at school (in the classroom). She has always struggled with the relationships side of things in school (and the busy classroom in primary). When she was anxious in primary (yr5) they provided group nuture sessions weekly (which she loved). We started spotting more overt ND signs in yr6. Her teacher just said 'I don't see any of that at school' and called her bossy.

When things started going tits up a few weeks after she started secondary I contacted them and they gave her weekly sessions with the wellbeing counsellor to help with the 'emotional challenges' of starting secondary. DD didn't think much of these and she was 'discharged' after half a term as they said she was now settled at school. I think DD just masked her way through those sessions as she didn't much like the counsellor

I would second a good OT.

Regression is really common with ASD / ADHD and it isn't limited to two year olds who stop talking. It can also hit at puberty or at transfer to secondary, where self-care skills appear to fall away because the child has nothing left from the things that they have had to contend with during the day. If you need to do things for her during Y7 rather than arguing with her about why she should do them then try doing that (helping her dress, brush teeth, pack school bag for the next day). Obviously that's not a long term solution but it can help in the short term.

Difficulty sleeping - some people disapprove but the torment of a child who cannot sleep can't be underestimated and melatonin has been a lifesaver here.

The constant questions sound like anxiety so visuals visuals visuals. Our house is festooned with lists and timetables - a getting home checklist, bag ready for the next day checklist, copies of her timetable downstairs and upstairs because she likes to check and re-check it.

We also have a sensory area where DD can go if she gets dysregulated. You'll need an OT assessment because what will actually work varies but deep pressure is a good one here so weighted blanket / weighted cuddly toys and, counter-intuitively, if she screams at us what she usually needs is not a telling off but a really firm squeezy hug.

Are you and DH able to countenance "playing alongside" for things like family movie nights? So on nights where her sibling chooses the film, she chooses the snacks and is allowed to play with something else but in the same room (same courtesy extended for the sibling of course).

AuDHD is a really difficult combination - autism craves repetition and routines but ADHD doesn't let the routine happen; ADHD craves novelty and excitement but autism means that also causes huge anxiety. It sounds as though she is fundamentally a nice child who would not choose to be kicking off at 11pm if she could contain it. Learning more about ASD and ADHD might help her with insight into why this is happening and strategies to manage it.

What sort of things cause her to kick off?

Thanks @LauraMipsum

I've read lots and I think I have a relatively good understanding of what's going on. I recognise she doesn't want to kick off at 11pm. Kicking off at 11pm will be at the time the light goes off (when suddenly her duvet isn't right or her cuddlies aren't right, we haven't given the right type or length of hug, we seem frustrated or cross). But you can see it building up before then if/when it's very hard to get her to transition from one stage to the next of the bedtime routine (e.g. getting her to go upstairs, brush her teeth, put on her pjs, pack her bag). We do all these things with/alongside her. Although the 'chivvying' involved in that can lead to the build up that then results in 11pm kicking off. So it's a fine balance of sitting with her while she does those things and/or coming in and out of her room (e.g. 'I'm going to go and put on the dishwasher, but when I come back you'll brush your teeth'). We help her pack her school bag. We put our her clothes the night before. We drive her to school (she could walk, but that requires leaving a lot earlier and stresses her out). If we get even in the slightest bit frustrated and show it (which frankly, you'd have to be a robot to not do) then that escalates things (she'll start claiming we don't love her, are cross with her, etc, or that we're terrible parents or, if things get really bad, that she hates us and then starts screaming at us to go away). if when she's getting aggitated we try to gently cajole her she will often just start shouting 'NO'). By this point her sibling has been woken up, I'm on the verge of tears and DH is quietly fuming.

We started giving melatonin a few months ago and it helped a lot with getting to actually fall asleep (she used to lie awake for a long time). But it doesn't help with the bedtime transitions.

Movie night 'playing alongside' - yes we've done that at times (if it's a film DD doesn't want to watch she can read a book while we watch it, if it's a film her sibling doesn't want to watch, they sometimes watch something else on an ipad in the same room).

Thanks for terming this as 'regression' - that helps me understand more about what's going on and it makes sense. And I will look into OT once the AudHD assessments are done (I do'nt want to overload her with different assessments at the same time)

I know a girl who is great at masking at school but then it all falls apart at home too, when she doesn't sleep she has medication (melatonin I assume) and is medicated daily which helps immensely. She is diagnosed with ADHD and autism though so.can get these on prescription
She's so.much happier being medicated and life is much better at home although not.perfect

I have been exactly where you are .. she’s now 18, are we are out the other side.

She has ASD / ADHD / Anxiety.

Meds made a big difference to us, as did talking therapies.

We changed our parenting, went low-demand, and tried to give her as much control over her world as we could.. that did not mean dictating to the household, that meant things like leaving her on her own in her bedroom if she was feeling stressed and anxious, not popping in with helpful advice, or trying to steer her away.

Tech is an odd one .. we also had the screaming fits (I thought the neighbours would call the police) when we took things away. I did stop taking things away when she was about 14, I realised I was punishing her for things that were not her fault .. but where part of her disability. She used tech as a form of emotional regulation.

Weighted Blankets are good, also, get her to put the phone outside of her room, rather than you take it away.

Punishments that work for NT young people, don’t tend to work in ND ones .. so save your breath.

DD is “younger” than her friends.. she’s 18, but more 15. I accepted some time ago that’s she’s about 3 years behind her peers, but that’s ok, she’ll get there.

My major breakthrough came when I took the conflict out of the relationship, I told her I was on “her side”, I started to step into her world instead of expecting her to fit into mine.

Parenting a child with a disability is difficult, it’s something you have to learn. There are lots of us out there. The Autistic Girls Network is a good place to start.

Her difficulties with school sound incredibly like what we experienced with DD.

I think we we're very fortunate that there was a very switched on teacher at my dd's school who spotted it.

Just a heads up, make sure any assessment you pay for will be accepted by your LA and DD's school. They will reject some assessments if the assessment isn't carried out using specific frameworks. I know of several people who have paid thousands for a private assessment only for it to be rejected by the school and local authority.

"suddenly the duvet isn't right" - this sounds soooooooo much like my DD! I have nothing left but solidarity! And yes, you have to be a saint or a robot not to react.

(Re reading my post it sounded as though I was suggesting you needed to learn more about it which wasn't what I intended, it was for her to gain more understanding of her own brain as that has helped my DD to be able to identify what is going on.)

My advice would be to stop chivving her along .. pack her bag, put her clothes out, and leave it at that.

The most I would do is to say, probably once “don’t forget your teeth”

All that chivvying and encouraging will be triggering - not just for her, but for you.

I’ve been there with fustration, but take the pressure off.

“to get enough sleep for tomorrow, you could do with being in bed for 9, you know what you need to do, I’ll leave it with you”

I really recommend the Explosive Child by Ross Greene. You describe loads of situations where you can see the stress building - and you're experiencing it too - it's really worth thinking about his model of breaking down what's going on in each of those situations. If you keep doing what you're doing, you'll get the outcomes you're getting now.

To be honest, you might need to not blame her so much for the dynamics of the whole house. You sound worn out - but as the mum of several autistic kids, telling you stuff about their special interests again and again and again, interrupting, telling you about sensory problems, not sleeping - you need to let it roll over you. Better still learn to love them for who they are and what they do. Otherwise you're fucked.

@ExtraOnions yes low demand does help. She's fine in the holidays and I went completely no-demand the first week of the Xmas hols for her and it helped enormously. The problem is, there are demands on her (like going to bed, getting up). Maybe we need to let her dictate her own bedtime? Tell her she can read until she's sleepy and wants to turn off her light? We have tried that though and the problem is that she wants us to tuck her in/ turn her light out and we can't do that if we don't know what time her light is going out (and if she calls downstairs to us it wakes up her sibling). I like this a lot though (“to get enough sleep for tomorrow, you could do with being in bed for 9, you know what you need to do, I’ll leave it with you”). I'm going to try that. Thank you

In your responses as well .. “my duvet isn’t right” “I believe you are sensible enough to sort that out for yourself”

Don’t fix things, let her fix it.

We are trying so, so hard to do this at the moment. But it's so fucking hard. A lot of her 'stuff' triggers me (therapy is helping me with that and I'm a lot better than I was a year ago). Neither me nor DH were parented particularly well and the idea of validating someone's feelings was completely alien to me until about 4 years ago. I kid you not. My parents were of the 'pull yourself up by the bootstraps' and 'it's all in your mind' school of dealing with feelings. DH basically had no emotional nurture at all as a child (and it's amazing he's not totally fucked up as a result and is in fact a lovely, gentle, kind man) and as a result he's not very good at understanding what's going on emotionally for the kids.

I read the Explosive Child years ago and didn't find it that helpful. Often if I try to come up with collaborative solutions with DD she'll get very angry with me. E.g. she'll shout 'how should I know?' if I ask her what might help bedtime go more smoothly

What if you tell her that she can read quietly until she's ready to go to sleep, but you will tuck her in and say goodnight at X time, and if she chooses to stay up past that time she will have to turn her own light out and you won't come in again - not as a punishment but because you have already done so.

Eeesh - that would lead to full on screaming ('NO I WANT YOU TO DO IT FOR ME. WHY ARE YOU SO MEAN. WHY DON'T YOU EVER DO ANYTHING FOR ME. YOU JUST WANT TO GO AND WATCH TV WITH DADDY OR GO AND WORK. YOU ALWAYS WANT TO GET AWAY FROM ME'). etc etc

But I coudl maybe have a conversation with her in a calmer moment saying that this is what we will say in the future...

This situation is very common where kids are ND. It's almost textbook so I have zero doubt your daughter will be confirmed Autistic/ADHD ( one or both).

This is the story we are at now. Have a diagnosis and now proceeding to medication options. My first is to try ADHD medication now to make school more tolerable ( detentions and stress non stop).

I want to try everything medically until something helps.

Problem with the NHS is waiting years and getting anyone to prescribe. I'm just going private now.

School is usually the great source of stress and resultant problem at home. This is a national crisis imo. No suitable schools exist. Mainstream schools are going borstal style on kids. Disaster.

@ExtraOnions has a lot of great points especially with going lower demand.

Just wanted to add that your DD may have rejection sensitive dysphoria which could be why her responses to your frustration can be so outsized. I've stressed with both my kids (one autistic, one ADHD) that you can't control someone's actions, only your reactions. Sometimes self-esteem building can really help too. You might look into Ellie Middleton's book "How to be you"

This is an excellent example of what is so hard with her. That is a completely rational solution. We have tried this. She just gets aggitated and 'insists' that we come back (loudly). If we explain that we have already said goodnight and it's her choice to read for longer, she will just start 'kicking off'...

FML. Seriously.

And yes we've gone private. The GP already ssaid they won't do shared care, so we'll have to suck up any medication costs if that is recommended. But at this point I'd sell my kidney to have happier children and a more harmonious life.

We put DD in a small private non-selective secondary school because I knew there'd be no way she could cope with a big, busy secondary with limited SENCo support/ disruptive/ mean kids.

@HippyKayYay I would be sure to make the assessment for Autism and ADHD your number one priority here. I can't tell you how important this is right now to have that report. You will need this to deal with the school stuff that will blow up in your face and more important to look at all medication options.

Edit -she is in a more suitable school so you'll have much less fall out than typical mainstream 🙏

Ideas:

Own bedroom if possible so disturbance if other child is minimised.
Visual timetable.
Calendar where she can see it (I put blackboard paint on all one wall of the kitchen and we use that)
(These don't help directly but you can redirect anxious questions to go and oook at the timetable or go and look at the calendar.

Melatonin
(Didn't work on my child)
Loop earbuds

Abandon all hope of nice family time. Settle for not killing each other. Do 1:1 time with each child and swop adults around.