Cannot cope with our children anymore

[RainbowAndArrow]

6 and 4
6 year old has ASD. We suspect 4 year old does too.
They are like hurricanes. They don't stop talking. Everything needs explaining to the nth degree
But the bigger issues is the volatility of behaviour. Fine one minute then utterly unreasonable and not listening at all the next. 6 year old then has massive guilt, tears etc only to repeat it all at the next opportunity.
4 year old wouldn't stay in bed til 6 today (that's our rule). Screamed at me, hit me when I tried to put her back in her room.

I'm getting hit before 6am on a Saturday. I'm utterly exhausted.

I could have written your posts except I also have a baby as well 😬 we have similar scenarios. Very fraught, only ever a couple of seconds away from someone losing their shit. Never doing what they’re asked. Too much noise, overwhelming. Eldest is ASD and suspected adhd with PDA traits. Middle is suspected adhd.

We have tried a few things and the following seem to sort of work for us:

• very strong boundaries and rules. We don’t let our kids do a lot of things that other kids are allowed to do, we tightly control quite a lot. For example for breakfast they have about 4 things they can choose from and that’s it. So in your example about the strawberries I would have said at the beginning you’re allowed 7 strawberries or whatever, not the whole punnet. This is so the ASD kid knows what to expect and the adhd kid doesn’t go stupid with stuff (which is what usually happens, she’d take them all and then tip everything out of her bowl and start throwing them or something). If I’ve said they can have 7 strawberries I wouldn’t change it to 8. This makes me sound really mean and horrible but I just know that what appears like being flexible and laid back actually makes my eldest in particularly really anxious. She likes certainty so I try to stick to my word. If I do ever have to change a boundary or plan I try to explain why
• tv time is very limited and again very strict, they don’t have complete free choice over what to watch, we will give them options that they have to agree on to avoid fights. No tablets, no access to YouTube. Kids with adhd are like dopamine addicts so find YouTube is the worse thing for them.
• I know what will set them off so we have lots of non-negotiable, for example if my eldest gets cold when we’re out and about it’s game over for everyone, she has a huge meltdown. Yet she will also insist she doesn’t want to wear a coat and it’s not cold. So I often say, right ok if you don’t want to wear your coat then we’re not going to the park. I know lots of my friends would just be flexible and say ok fine but we’ll bring it in case you’re cold, but the pda traits in my eldest wouldn’t let her admit that I was right and she did need a coat so then she’d never ask for it and she’d end up freezing and then it would be a shit show.
• clear consequences for hitting or other unacceptable behaviours
• very clear and consistent routines, that we almost never break

this is probably going against the grain as lots of people talk about low demands, giving them loads of options etc but I’m taking the opposite approach of getting them really used to demands and helping coping with the anxiety it can sometimes cause by having really clear boundaries. This can sometimes perhaps make my ASD kid a bit more rigid about things but the trade off is more predictability and less room for uncertainty which seems to help with the anxiety.

Also just to say that there’s actually not a lot of research on PDA so although some people find that a low demand lifestyle works for them, don’t assume it definitely will and also bear in mind that it can end up creating a situation where the kids seem to be the ones “in charge”. Some people argue that this is what a PDA child needs but from my own knowledge and experience I think kids with high anxiety - which is often the root of PDA behaviours - actually end up feeling even more anxious when they are “in charge” which then leads to yet more challenging behaviours. It can also have really significant consequences for the rest of the family - there was a post on here the other day where someone was saying they’ve adopted a low demand household for their child which has reduced violent outbursts but also means she’s not “allowed” by her child to do lots of things including speak to her husband. I’m not saying low demand doesn’t work for anyone but I would really look into the options very thoroughly before you start any changes.

But you have to keep going, you have to be consistent.

‘Chats’ aren't enough, it needs to be much more ‘formal’.

What do you use for the visual timetable? What do you use as a timer?
What do your children respond to for praise or reward?

When it has worked, what have you moved on to tackle next? Are they able to maintain the already achieved actions?

Alexa is our timer
We had a velcro visual timer but they decided to play in the garden with them so they have now dissipated.

Honestly tonight I feel like nothing has worked. And all I can hear is my son's body whacking against the wall while his sister screams at me.

That’s my post I think you’re talking about. Where DC can’t let DH and I speak to one another without interrupting & trying to break up the conversation.

I think that kids who are a bit more classically ASD - even with PDA traits - often do well with structure and boundaries and very clear expectations and consequences. There are semi demand-avoidant ASD kids in my extended family like this.

My kid is straight-up PDA / ADHD with none of the ASD traits that incline someone towards order, routine or predictability.

We tried all the boundaries, all the routines, all the consequences. And if we’d kept going with that I’m pretty sure we’d now be in real physical danger from a strong and rapidly growing boy. As it is we have a kid who goes to school and has a good sense of humour and plenty of friends with whom he is generous and kind. He hasn’t hurt us or anyone else in a few years now.

Low demand is an absolute last resort for most families when nothing else works. It’s not how many people instinctively parent, or want to parent. Yep, our DC is in charge of a lot of things. But he doesn’t totally dominate our lives like he did when we were attempting visual timetables and consequences.

I think some ND families have a shot at a relatively typical-looking home life and others just don’t. Believe me, I’d rather things were different in our family, I never wanted to be a ‘permissive’ parent - I was absolutely prepared to put in the work to have polite, well-behaved children.

I’m so so SO weary of people’s assumptions that things would be better if we insisted on implementing all the parenting approaches that were our first port of call - and just led to chaos and violence.

If people try low demand and it doesn’t make things better, then it’s probably not the right approach. But nobody’s doing this for fun, or out of laziness, or because they’re soft.

Sometimes things are as good as they can be, and they are still very very fucking hard.

Cortisol was the word that escaped me

@RainbowAndArrow the ruminating on the bath incident is hard to move past. I think incidents at the end of the day particularly so, as it makes the whole day feel like a failure.

But overall you had a chilled day with a poorly DC, your son had a good day at school, an after school activity and won an award. You could unpick the scooter and garden stuff as sensory seeking, trying to maintain the feeling he had when he won.
And he reflected on it all when calm that it was difficult.

@VoltaireMittyDream I really agree. All 4 of my DC are autistic but DS3 needs very different strategies. Timers and visual timetables causes more anxiety and dysregulation. He has formidable staying power when he feels backed into a corner, or even when he just gets an idea. Like being able to stay awake all night, like last night(!)

DS2 is incredibly compliant but almost too much, which had a lot to do with him burning out in Yr10/11. Thankfully he's come through it, but he was the last of my DC I thought would ever struggle to attend school.

We bumble through, from the outside I'm sure people think we're far too permissive, but I'm way past caring.

Thanks, I am reading everything.

Just decided that we will have to go on the trampoline alone and have a time allocation because within two minutes someone is hurting someone and screaming.

DD was v rude today so kids YouTube has been banned. Following last night we aren't having baths either.

DD now crying through dinner because she's worried about school.

I'm just heartily fucking sick of it all.

Have you decided to focus on just one thing as suggested?

Nothing is going to change if you carry on doing what you've always done.

You tried with the visual timetable but why let them get it and take it out into the garden? Hang it up, use it repeatedly.

I bought it and I put it in the playroom to go through with them that eve.
They went in, opened it all up and went round the garden with it.

What's up with dd and school?

One of mine suffers hugely with school anxiety which is now full on unable to attend school. Looking back now, the pattern was dysregulation after school and lots of general anxiety around school due to unmet sen needs.

She's worried about starting school (starts in sept)
She's always been a it nervous round transitions but it's got worse recently.

I have a 6 year old exactly the same, read some of my old posts if you want some solidarity and to feel less alone! I’m currently laying next to her in my bed while she rolls around doing downward dogs, shoulder stands and beat boxing instead of going to sleep. It takes her over an hour every night to settle and she won’t go to sleep on her own. Like a PP, we’ve always known there was something going on, but things really kicked off in reception at age 4. The sleep stuff and violence etc escalated, but really it’s like she never left the terrible 2s with the hitting etc. I can so relate to you with the feeling of constantly being on edge, I was trying to explain this to the SENCO the other day and could only sigh and say honestly living in our house day to day is just intense. Me and my OH are just in fight or flight mode all the time trying to pre empt her behaviour. Shes very anxious about school as well, we moved her to a smaller more nurturing school which helped. She also won’t go anywhere in the house without me, I still have to stand there and watch her go to the toilet as she’s too scared to go on her own. I have no answers, we try the low demand stuff as well but tbh it doesn’t come naturally to my partner and that causes enough meltdowns and I have diagnosed ADHD so quite often find myself losing my shit and feeling full of remorse afterward. She’s on the pathway, I don’t think she’s autistic but I do think she has ADHD like me.

Sorry if this sounds critical but are you supervising them enough? At 4 and 6 they should ideally be able to play independently but mine can’t really as they can’t be trusted not to do daft shit and/or fight. You may just have to accept that you have to supervise them more like they were 4 and 2.

Sorry the above was in response to the thing about the strewing the visual timetable all round the garden.

Yes, I was cooking dinner at the time. But yes, my total supervision is required all the time.

Fight or flight is so true! It's knackering isn't it. Mine go from total rational to arseholes.
Like on holiday they were great til we got back into the hotel room and then everyone like clockwork they went mental.

This is what happened to every visual timetable we ever put up for my DS! He’d rip it off the wall and fling it across the room. Or take the little Velcro things off and hide them. He couldn’t ever articulate why it gave him such rage but my guess is either it reminded him of being at nursery / school or he just felt it was telling him what to do.

That's stressful for you.

This wasn't rage it's just uncontrollable interest. They can't leave anything or just let anything be, it's 40000 questions and touching stuff, moving it around etc.

I think part of me struggles because their vocab and understanding in many ways is far beyond their years, so I forget they are small. DD has a memory box in her bedroom and I went in the other day to find she'd ruined some of it. I shouldn't have left it in her reach but I forget that when she then says 'id like some broccoli for dinner because I had blueberries for breakfast so that will mean I've had two super foods today" or 'who is the other person coming to tea tomorrow? You said 8 but you only gave three names when daddy asked and that with us only makes seven'.

It's utterly knackering constantly explaining stuff

It's utterly knackering constantly explaining stuff

This is such a negative attitude. There are a lot of boring and frustrating aspects of parenting, but it's an utter privilege to be the person who gets to explain things to the precious little humans you love most in the world.

A lot of what you have described on this thread is normal childhood behaviour, but it sounds like you have very little patience with it. Have you ever had counselling? Would you consider parenting courses? The last thing you want is for your children to internalise the negativity you are feeling.

Respectfully, you have absolutely no idea what you're talking about.
Thanks for your input though.

You sound exhausted and defeated, and I can absolutely understand why. It's so hard sometimes. Really, really hard.

You've received a lot of good advice from PPs so I won't repeat it. But one thing that might help is to talk to your children about ways to manage their emotions. I know someone (who is one of the parents I admire most in the world) who talks about tools in a toolbox. It's a metaphor that often works with young children because they can visualize what it looks like and they understand the concept. You can even create a physical box with objects inside, but that isn't necessary. So you discuss identifying emotions and the various tools they can use when they are feeling overwhelmed, angry, worried, etc. (deep breathing, yoga poses, blowing bubbles, cuddling a toy, etc.). If the children themselves can think of tools that they think will help, so much the better. Then at a moment of frustration/anger/upset, you ask them to stop and think about those tools. Which one do they need now? Of course, it's important to time this intervention, before they become completely overwhelmed by emotion and can't focus on anything else. Eventually, the idea is for the children to be able to access their "toolbox" without your help.

I'm a believer in teaching self-control which may sound old-fashioned. Nowadays people may talk about emotional regulation, but I also think it's important that children learn that they can manage their responses to stressful situations. It can be very empowering and really is a tool that they will use all their lives. For children who are ND, it may involve tweaking the approach in some ways (e.g., the tools in the toolbox might be different). But building an awareness of emotions and ways to manage them is something that benefits all children IMO.

Anyway, just some ideas. Hang in there!

It's the coke bottle effect. They've masked and masked until they're back in the hotel room and suddenly the masks come off because it's safe. This might not work for you, but on holiday i build in regular breaks for my kids - ie go to the pool for a few hours, then go back to the room for an hour's ipad before dinner, then lots of quiet downtime before bed. We go to Butlins etc but we never go to the late night entertainment because they'd just be so overstimulated and overwhelmed. Holidays are great but for an ND child they can be a sensory nightmare, away from their home space, out of routine. Mine at that age would take literally suitcases full of toys so they felt at home. We never fly so that does make it easier to take as much stuff as they want.

It is tempting to want to let them do every thing on holiday - but as the parent the more you can keep them under threshold, and build in lots of breaks, the less stressful it will be.

What a load of old nonsense.

Until you've had an ND child who doesn't stop talking, and needs constant input, sit down.

Yep we did lots of breaks and downtime, and ha ha yes lots of toys
DD takes kids of toys with her, everywhere

Thank you. I really really appreciate that.