yes I was but how the hell do people cope with this?! (ASD/ADHD DS(12))

[TillyTrauma]

I need help.

DS (12) is being assessed for ASD/ADHD. Private Ed Pysch currently working on the report. My Plan Plus in place. Ds is 'gifted' level of intelligence which adds its own quirks to the situation.

DS is hugely violent when triggered, DH and I are both covered in bruises regularly. It takes both of us to restrain/remove DS if we need to. 2 younger siblings are scared of him. He is routinely verbally abusive. DS refuses to do any chores/tasks/personal hygiene requirements.

DS has not showered in over 3 weeks. He stinks. He wont let me in his room to collect laundry and wont bring it down so his clothes all stink. Last night we insisted he had to shower (he had been hiking so was muddy, sweaty and had got wet from the rain). He refused and kicked off. DH and I manhandled him into the wet room. He screams and attacks us. then refuses to get in the shower. So we turn the shower on and spray him with it, fully clothed, to at least get some of the smell, dirt off him. Understandably he went nuclear, DH and I are battered and bruised. We are at the end of our ability to cope.

I'm waiting on our family support worker to call me. I have emails in to the school senco and head of year. I have a GP callback later to up my medication as right now i want to get on a bus/train/plane and never come back.

How the hell can we live like this? i keep telling myself that once we get a dx we can hopefully get him medicated to help but that could be months away. how the hell do we do this? how does our family survive this?

So yes, i know i was BU to blast him with the shower but what else was i supposed to do?! (straw that broke the camels back)

Is anyone else out there dealing with a child with these issues? how in the hell do we do this?

I'm so broken.

There are alternatives to "tough love".
That's my point.
There are autistic young people and adults in appalling psychiatric and residential care because tough love just escalated and escalated to the point of total break down (and abuse) - and that destroys every member of the family not just the one locked away.

For the room issue I’d suggest he is showing you he isn’t coping with knowing how to fix this issue. So I’d pick a weekend day (so he doesn’t associate it with school) two weeks from now and tell him very clearly without any emotion about it, that on that day you are going to tidy and clean his room and he is going to go to his grandparents. Tell him every single day. Whatever he feels, listen and comfort but calmly hold firm that, that is what is happening. If he gets too distressed move on to another subject he likes. To start with he will have a total meltdown. But slowly he’ll come to accept it.

We had to move furniture around for my ASD son and this is what worked for him.

“Leave him outside social services”. “Stinking odd ball on the bus”. This kind of ignorant bollocks is why the SN boards are hidden and don’t appear in active conversations. Because otherwise offensive, ableist gobshites who don’t have a fucking clue come wading in with their vacuous opinions.

Emma posted about "blocked care and secondary trauma". This was new to me and I looked it up. I think it's worth a look. I have two teens with ASD and I think the blocked care applied to me when they were really bad. It was the walking on egg shells all the time that shredded my nerves, having to think carefully about how to do every little thing to avoid triggering and then setting them off somehow anyway and whenever they kicked off I wanted to kick off. It's really hard when you get stuck in that rut and you probably can't see it. I think her advice is good advice. Create some head space for yourself if you can and take a break to reflect. Sending hugs to you.

We are talking about a 12 year old. 12 year olds don't behave this way for fun.

Before posting, remember that we are talking about a distressed 12 year old whose needs aren't being met.

I like Ross Green's phrase "Children do well if they can."

I'm sorry, that's vile. it's completely unacceptable for him to use a swimming pool as an alternative to washing, how incredibly disrespectful to everyone else who uses the facility.

I could have written lots of that original post, as we were in exactly the same position with our (now 16 year old) DD.

ASD wasn’t even mentioned to us until she was 14, and had a breakdown after / during lockdown.

Pre-lockdown we had the violent outbursts, I was punched, kicked, bitten & head butted … her room was a disgrace, same with her personal hygiene. We were referred to CAMHS as having “anxiety” but it became obvious it was more than that …. We are two years in an awaiting her final diagnosis.

She missed most of Y10 & Y11, but passed 5 GCSEs (including maths and English), though she isn’t starting college until next year.

We just had to learn to parent differently … I would leave a tray outside her room, and ask her to put her pots on it (we now have no pots in rooms overnight). Asked her to leave her washing basket outside. This all eventually got much better, her room is still a bit messy, but no longer smelly & dirty.

With her personal hygiene, I would just buy something nice when I was out shopping (a bath bomb, a shower gel with a picture on I knew are would like) and just left her with it.. and then I stopped mentioning it. It’s all much better now, she showers a couple of times a week .

I just tried to stop putting demands on her, or, giving her options (she hated options) “if you wanted to put your pots on the tray, that would be great” etc.

manhandling is a big no no … and don’t try and talk to someone (Howeber reasonable it seems) mid meltdown

He knows what he needs to do, you need to leave him to it.

We have sensory challenges with ASD and demand anxiety big time in our house.

8-12 weeks between shower or bath is usual. I'm n a plus side it saves a fortune in power.

Things I've found that work is deep cleaning the bathroom, new towels out, soft lighting, filling the bath and putting sensory soothing things around it. So I use foaming soaps and sponges to offer ASMR.
Then I cheerily pop my head around the bedroom door and say 'there's a fresh bath in if you want, it's clean, warm and fresh towels and there is asmr on the side too . Don't worry if you don't want it, I'll have it later if you don't'

In that sentence you've set out that the sensory side is covered, our had an aversion to having any hair wet and touching their skin. You have provided all the things they need, without pressure (demand).

This increased the likelihood of them cooperating and having a wash.

The other thing I taught them is

1. Triangle trick, probably more for long hair. Take a Combe or fingers front your ears to a point on top of your head. Tie the rest back and wash this triangle of hair over the sink. This bit of clean hair covers the rest and smells better. If they really can't cope with hair washing it helps.

1. Teach them (show them when they are small) how to strip wash quickly. Hot soapy washcloth under arms and between legs. Rinse. This can help in general hygiene if the can't bath or shower.

1. Fresh clothes help. Washed clothes feel different on the skin and it's another sensory stress. If you can find a garment that causes less sensory stress, I buy x6. Then it's easier to rotate.

Our psychiatrist suggested baths as a way to soak and reduce anxiety! They have no idea. I gently pointed out that the mental energy needed to wash would use a whole days energy, it's that draining, that much of a sensory battle.

It's a completely different way to live. Sensory processing disorders are exhausting.

Stop beating yourself up. It's a hard condition to deal with.

I found giving two options helped. Eg. Do you want to have a bath or shower now?

Do you want to put your clothes in the clothes basket or firvne to come in and get them?

You need professional help too which you can only get with a proper diagnosis.

@thepurplewhisperer's tips are good. We do similar.

I will add I'm not above bribing DD into the bath by saying she can eat a biscuit in there or use my 'very expensive' products. Or mess about with food dye (washable kind).

Our NVR counsellor explained with this kind of parenting you have to bring your A game every day. Some parents may be able to get away with not doing that. They have more tolerant DC.

It's no shame to find doing a hard thing, hard.

I’ve only read your posts, OP, so someone else might have already suggested this but you can get water free soap that you apply to dry skin and then just towel off. I think it’s by Nilaqua.
I’ve not used the soap but they also have shampoo caps so you can wash your hair without water which works really well when your shower doesn’t work for days…
You’ll know better than me whether that’ll will work for him though! It sounds like a really difficult situation and I hope you all get some help soon

There are people who only wash once a week anyway are they not allowed to go swimming either?

DS goes twice a week, so has a wash twice a week. It's a pool that is usually full of kids, and I don't expect every single one of them has perfect hygiene either.

Maybe not but in our local pool, you have to step through a shower before you enter the pool.

Lots of amazing advice and support, thank you all so much.

So DH and I apologised to DS and we had a lot of cuddles and gentle chat. We have reached a compromise of him showering on a Sunday and then 2 other times per week and he had a shower last night successfully without any meltdowns or raised voices.

I'm busy working my way through the resources people have recommneded - thank you, some good bits and pieces there. DH and I have a lot of reading to do!!

I have managed to collect a selection of DS' clothes that had been abandoned around the house and got those clean and dry. He took some from that pile to put on after school rather than dirty ones from his floor which was amazing.

I have said that he has until dinner time to put the rest of the clean clothes in his drawers and that i will put them away for him after dinner if he hasn't. I have promised to touch nothing except the drawers and clean clothes. he says he will do it. he seems calm but remains to be seen if he will do it.

spoke to our support worker who is making an appointment to go and see him at school and then to see me and DH afterwards.

still feeling very overwhelmed by the whole situation but things are a bit better today.

Thank you to everyone who has shared their experiences and offered advice.

What a great update @TillyTrauma
Well done. Its a hard path and finding the right support is vital. And so is being able to start a new day after a bad one.
Good luck to you all.

Great stuff @TillyTrauma
It not only makes it easier on your DS, but hopefully you won't have the stress of walking on eggshells. Good for you! I wish you all every happiness in finding your way through. :-)

Wow what a fantastic update.

Everything is hard when youre in this situation and it's so important to celebrate the "wins" even though friends won't "get it." You are doing amazingly x

@TillyTrauma

That sounds like real progress. Well done, and thank you for being those parents. 💜Hope that doesn't sound patronising. Your update is really heart-warming.

Thanks guys. It really is the tiniest things that need to be celebrated.

He took the basket of laundry up and put it outside his room but said he would do the rest later and didn't do so before dinner. now usually i would say 'right i'm going to do it because you haven't' (or similar) and he would meltdown. instead I have just quietly gone up, put the laundry in the drawers and closed them and then left. i have touched nothing else. It will be interesting to see his reaction or even if he notices i've done it (he was downstairs reading when i did it. if he accepts that its happened and is ok then hopefully we can build on that technique. baby steps.

i've been giving it all a lot of thought and i think it may be that for him the fear of someone doing something is worse than them actually doing it. so as l stay really really low key about what i'm doing then i have a better chance of not triggering him.

interesting what someone said upthread about parents of ND kids need to always bring their A game. that is a terrifying and exhausting prospect but i can see how true that is.

So much help on this thread I'm going to look into it myself

Absolutely celebrate - its high intensity parenting and its exhausting. It will be so worth it though.

And yes its a fear response. Something seems scary/unknown/overwhelming. It might be like asking a non autistic to go into a room of snakes for example - the things that seem small to a non-autistic can be hugely overwhelming to someone autistic.

So saying you will go in and "take the dirty cups out" is soooo much less overwhelming that "I'm going to tidy your room" (CHANGE! Will I like it? Where will everything be? What if I can't find my things... etc etc). Similarly something small and achievable like "Can you put your dirty mugs outside the door before dinner and I will bring them down and wash them" is a lower demand than "can you tidy your room" (HOW!? Its such a mess? I dont know where to start? Or where I will put everything? What if I get it wrong....)

These are only examples so may obviously be different for your son. Good luck - it sounds like you are on the right path x

Look up Yvonne Newbold and New Bold Hope, she has lots sessions in challenging behaviour and anxiety and low demand parenting. She’s a parent of a ND child herself.

@TillyTrauma
I feel for the OP here. It is a terrible situation that any family would dread having to experience. Unfortunately, even with ADHD medication, the refusal doesn't scream ADHD and so you may find that if he has ASD that this is going to really complicate things.

I know people really find applied behavioural analysis really aversive (ironically) to consider, though the fact is something needs to change. He can't go through life blowing up or he will be shunned and seen as a disruptive, difficult and abusive person. Regardless of what the causes are, society won't tolerate this type of behaviour (rightfully, violence toward others is simply not okay, regardless of the reason).

I am curious about what it actually is that causes the blow ups? Look at what happens just before the behaviours (define what they actually are, a blow up or melt down isn't specific enough really. What does he actually do? The more specific the better). What is the behaviour trying to do for him? Get you to back off? Escape demands? Get you to do things for him? Every behaviour is caused... the best way is to figure out what it is doing and then skill him up so that he can get the same effect without the behaviour that is making life hard for him (and you).

You ideally want to make the behaviour he engages in aversive and to reinforce behaviours that are acceptable. For example, what is the consequence of his blow-ups? I am reading that if he doesn't do X then you do it for him. Is that effective? It may well be though it may accidentally reinforce other aspects of his behaviour. The message he needs is "if you do X then Y won't happen". Or "If Y happens then X won't be happening".

You ideally don't want to get into a situation where every minor thing he does needs to be reinforced to the hilt. Firstly, that is extremely tiresome for you and also it means that he gets the message that every-day things that are needed are "big" and therefore he won't need to do the other more taxing things.

I am hearing that he has a HUGE amount of control over the whole family, and you are all tiptoeing around, hoping that he won't explode. It may be that you are inadvertently enabling him to continue though I wonder how life will be for him in 10, 20, 30 years-time when society pushes back and says, "er no... this isn't going to happen". In the short term this may feel less painful, though in the longer-term he may be in for one heck of a shock.

I say this with compassion because I have worked with people whose behaviours are out of control and difficult to contain. We don't need to fragilise people because they have a neuro-diversity. Its rare that people do not know that being aggressive to others isn't okay. Extremely rare.