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.

Building up his ability to regulate/cope in small steps will be the best way to make progress so he can cope better when he is older. Bit like learning anything you statt with small achievable steps and build from there.

Just expecting someone to do something they can't (yet) is cruel and doesn't work.

"If you do x then you won't happen" is absolutely NOT the message he needs.

That's like telling a wheelchair user if they don't make it up the steps they can't access the show. They need the accommodations to make it possible.

You don't get cross with a child who can't (yet) read and say they can't have things if they don't read- you support them to learn and in time they will..

When someone is already overwhelmed or anxious adding more demands and ultimatums is likely to lead to meltdowns/ shutdowns. This is horrible for the person concerned. Instead we need to look for triggers and help manage the environment until the person has developed x skill.

Learning to self regulate and manage controlled amounts of "stress/demands" however small will really help. As OP has already found - success!!!! Ultimatums just lead to more difficulty.

This is so insightful -
particularly the bit about knowing it is agression

I feel I have to comment on @Burgoo's advice about using a behaviour modification approach i.e. persistent reinforcement of "good" behaviour" and negative consequences to "unwanted" behaviour. She also refers to looking for what happens immediately before the "behaviour" and what happens as a consequence (the ABC approach - Antecedents Behaviour Consequences approach).

This whole approach is one that can cause immense damage when dealing with people with complex and divergent neurodevelopment. The immediate antecedent of the "unwanted behaviour" is most likely to be the final, possibly insignificant, final straw. The build up may well have started from the moment the child woke up. S/he may have been dealing with sensory overload, exhaustion from poor executive functioning, stress of social interaction, too many demands or too little structure, unexpected changes or lack of control - the list is endless and personal to the individual. The coke bottle analogy is widely used to illustrate this - i.e. the bottle is shaken during the day and its only when the child gets home and the cap is loosened that the coke explodes out.

You can't operate a reward system to stop the coke exploding. You have to change the other things much earlier in the process in order to stop the bottle from getting shaken so vigorously (e.g. adaptations to the environment and expectations or approaches at school) and /or leave the bottle for a very long time before attempting to gently unscrew the top (e.g. allowing time for 'decompression' after school and reduction in demands or changing the approach to demands)

@Burgoo is right about knowing aggression is not ok. It just adds to the distress of the individual, They are at breaking point and unable to control something they know is wrong and something they don't want to do. This is this basis of Ross Greene's approach (The Explosive Child). He says kids do well if they can.

@TillyTrauma has already shown how adapting her approach allows her DS to adapt his response. He didn't need to have the riot act read to him because he doesn't want to hurt his Mum! Its not enabling and reinforcing unwanted behaviour, its creating a place where the child can behave they way they want to (which is without aggression). From that safe space, the child learns about their own needs and how adaptations can help and begin to self-regulate. These are the tools that the child needs for themselves and their future.

Totally agree with @LosingTheWill2022 .

The thing is that the ones of us who have been through this and got out of the other side come to realise that it is not that the child is bad it is that the child isn't coping.

If you modify the environment that is causing the fight / flight response then the child isn't in a constant state of anxiety and the behaviour often falls away. This can take time depending on the degree of trauma.

Punishing or rewarding an anxiety response will only serve to make the child more anxious and will probably result in more of the kind of behaviour you are trying to prevent.

These children do know that this behaviour is wrong. They are not inherently bad.

The bottle of coke analogy is perfect.

Glad to hear you have found a way through challenging times too @lifeturnsonadime . I hope hearing our stories can support others on their journeys. It can be a very lonely place and pressure from outside can be so strong.
Another analogy I like is the seatbelt. Parents are pressured not to "give in" as if its a battle of wills. But it can be like when the seat belt jams. In order to move forward, you often have to take the pressure off, move back to a place where you are not jammed before moving gently forward again.

Medication.
Without medication, I'd probably be dead or in prison.
Do whatever you have to. Pay whatever you have to.

I have two children with ASD. They really hated showers at first because of the sensation of the water hitting their skin and face and the noise so baths worked better. If you have a wet room you could buy one of those portable bath tubs or even an extra large Flexi tub (they do 76 litre ones). Talk to him about how he feels about showers, my DD could very clearly articulate the issues so that we understood and could work with her. You could show him the tub option and see what he thinks about trying it.

With the demands thing my children get overwhelmed by too many tasks. To clean a whole room is too big a request, even my DD who is more able needs set tasks to keep on track. Also starting a task is overwhelming, both my children and my DH who has ASD find starting the hardest part of completing tasks.

Also saying you will do it because he hasn't done it is quite confrontational and maybe he feels bad because he wasn't able to manage the task and this just highlights this to him, hence the emotional response. The approach of just doing it quietly is less confrontational. I would start small with one request and then step away and give a good amount of time for completion, like by bedtime. The dirty plates on a tray outside the door sounds a good idea to start with because it is a smaller task and you don't need to be there supervising. Make sure you thank him and give him lots of hugs when he does it.

You sound like you have now got the communication back again, I hope the lower demand approach helps you OP. It is very hard.

Agree completely Losing the will.

I'm afraid that's why I daren't use public pools now..People go on them obviously unwashed. A ''Shower'' before going in?
If someone doesn't like showering, they aren't going to be washing their private parts and armpits in a pool shower, so all that 'Crud' will be in the swimming bath water.

Pools that make one's eyes sting?..That's urine reacting with chlorine to form a gas.
It's not pleasant once one know this goes on.
People using swimming pools as ''Baths'' and the pee {and worse} in public pools.
www.theguardian.com/science/2017/mar/01/how-much-pee-is-in-our-swimming-pools-new-urine-test-reveals-the-truth