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.

Tilly

The other thing to consider asking for a referral to is an OT, as it may be that there are some sensory needs at play. The feel of the shower or tooth brushing is fairly common. If you haven't already been referred then I would suggest you request the referral.

Obviously every child is different. If he wants to do it and it's suggested as an option he may agree. I'm not suggesting telling him he has to do anything, bit offering him options to facilitate what he wants to do.
My son is very high on the autistic spectrum and this approach works well with him. Obviously if it doesn't work for the ops child and he doesn't agree to it, then it doesn't work. It was just a suggestion.

I'm 5'5 and DH is only 5'7. DS is the same hight as me so yes, he can very much at least equal mine or DH's strength.

Saying “this won’t work, it’s a demand” is a key mistake people make with PDA. They find demand extremely difficult and anxiety inducing… that doesn’t mean that coping with a demand is impossible and that there should never be any demands placed upon them.

The aim is to get the child to a place where they CAN cope with demands- slowly, gently, firmly. We do these children a disservice by just accepting “they don’t do demands”. How will they ever learn to function in society if we don’t support them to cope with the things they find hard?

Also if you look at it like that then everything in life is a demand. And he isn't diagnosed with pda, the op said he displays traits of a few nd. It may or may not work. Imo it's worth a try!

My child has a PDA diagnosis.

I'm talking from experience of the situation that my child was it a few years ago. At this point in time I don't think it would work. It wouldn't have done for my child, he'd have thrown the plates at me!

I agree that the child has to learn to cope with demand, but when they are at crisis point it isn't the right time to introduce them.

The priority has to be safety for the OP and family.

A better approach might be giving him the option of bringing plates out or agreeing time mum can go in to remove them.

6 years on from crisis my son can manage demands, does shower and does go to college, clear his room.

I agree that I perhaps wasn't clear in what I meant in my post. I should have qualified that it won't work when the child is in crisis.

Sorry have not caught up on the whole thread but sharing top recommendations:

• The explosive child by Ross Greene
• The Declarative language Handbook by Linda Murphy

The latter approach works amazingly with my PDA teen but also my NT DC.

And also the PDA society’s PANDA approach.

There are some really helpful Facebook PDA support groups too.

I think apologising to him but also washing and collecting mouldy plates non negotiable.
He has to be able to say how it is possible.
He has to understand even if he doesn’t want to/unpleasant and not necessary. That this still has to be done and the decision about how, is as much his as possible.

Ok I have a couple of suggestions as I have a 12yo bright DS who is autistic and aggressive (but not violent).
Have you tried the approach of these things (hygiene) being training for being a functioning adult? DS is keen on being an adult so he can please himself but we have spoken about it being something he needs to learn in order to be successful in future (so it's not a demand that comes from me but from society which he can get on board with)

Also I have found texting/WhatsApp convos or requests much easier eg your dinner is ready. There's hot water for a shower after . I never ask questions that start with 'can you' if at all possible

I feel your pain and I have totally lost my shit this week about DS sleeping with food wrappers in his bed and leaving sticky drinks cartons on the floor so I am no saint by any means

I don't understand what about my suggestion you think would trigger him into a reaction. I wasn't suggesting saying to him that he had to get something every time he went in his room, but saying to him, "if you want to tidy your room, but it feels too much at the moment what about starting with passing me a bowl next time you go in there?" And then the same next time, etc, so it becomes part of a routine to do something small each time he goes in there!

Unfortunately there are very few replies at times on the SEN boards.

I know you don't. You haven't had to deal with a PDA child in crisis.

Anything is a demand.

For a start there are too many words. Secondly you are asking him to do something.

With most children it absolutely is fine and is gentle parenting. We are talking about extremes here. Most people absolutely wouldn't understand.

And I know that the OPs child hasn't been diagnosed with PDA but mine also wasn't when displaying similar behaviour.

I absolutely know you mean well and I"m sorry if you feel I'm attacking your suggestion.

this might already have been covered, but do you have a bath? Can you get one if not? (Does he have baths?)

I rarely have showers as it feels like being stabbed by water and is unpleasant. My DD who is autistic will only have baths, and I have to keep mentioning it but telling her she can choose the day and time she has it (we go for one a week) and then there is a particular set up with an iPad to watch Netflix, various towels and head wraps and Oodie things all set up ready to go so that she is not cold for a second when she comes out (as that causes a lot of shrieking at times)

She is younger though and it sounds like your DS is much more affected by sensory issues around washing.

Does he like swimming? I ask because when DD was at her worst re: bathing or showers at home, she would still swim in the sea or go to a pool a couple a times a week, so that was her choice, snd strangely enough she would choose to shower after the pool.

(In showers beside pool not at home)

DS is 13 and diagnosed with ADHD. We also believe possible PDA or similar but it isn't diagnosed as a stand-alone condition where we live.

As lots of others have said, we have found that taking the pressure off helps massively.

With regards to washing- DS will eventually be persuaded to have a bath if he can watch something on the iPad while he's in there, so we have one of those wooden bars that sit across the bath for him to prop up the iPad. I know you don't have a bath but could a distraction like this be worth a try?

Fair enough, though he hasn't a pda diagnosis. Obviously he's in a really bad place at the minute. Could that work if rephrased? I don't see how it's any more of a demand than the option of bringing out the plates or her getting them? My son would see that as more of a threat to do what he's told or suffer the consequences, if that makes sense.
I'm absolutely not saying I'm right, or you are wrong, I'm interested in what you think. Is it maybe just how different children perceive things? So the actual wording would need to come from the op as it needs to be child specific?

Sorry I don't mean to come across as defensive, I'm genuinely interested in different approaches that might help op, and also to consider for my son in different situations!!

Hi @TillyTrauma I think the biggest difference anything has made with our DS is mindfulness it really bought a sense of calm we had never seen before, but he started off his own accord not ours.

(We never really had the shower thing but shoes arrgggghhhh)

I'm absolutely not saying I'm right, or you are wrong, I'm interested in what you think. Is it maybe just how different children perceive things? So the actual wording would need to come from the op as it needs to be child specific?

Absolutely it will depend on the child.

People with PDA tend to prefer being in control. PDA is fundamentally anxiety driven so with PDA any demand, even thing the child enjoys can cause anxiety.

Autistic people without PDA also can be very anxiety demand avoidant, the difference is that it is not all consuming but the techniques can be similar.

Neurotypical people suffering from anxiety also avoid demands.

This is why I mentioned earlier the fact that medication for anxiety can be helpful.

My PDA went through a stage where even the demand of eating was causing violent outburst, that's extreme I know.

If a choice is given then sometimes, not always, the child feels in control and can manage the demand.

When my child was in crisis I had to simply let things go to stay safe. The OP might not quite be in that situation. After a period of decompression and some help (medication for anxiety) he preferred being in control by choosing the best way to achieve the outcome.

He ended up being home educated because school was too much. He wasn't doing any work. If I told him to do it it was a demand. In the end I had to say I don't care if you don't want to work for your GCSES but you will be limiting your life options if you don't. I was completely hands off. Never asked him to anything. Without the pressure of being told and just the guidance of providing the materials he was able to do it and now goes to college having picked his subjects and coming and going as he pleases. I never ask him to do anything. Ever. I give him options.

My daughter is also autistic she hasn't got PDA. She would find being given choices too much.

Every child is different.

I'm going to bow out now because I appreciate that I may be missing the mark.

I just was trying to speak from experience from the primary motive of keeping them safe.

Thank you for replying😊
It's really interesting to hear, and helps with understanding different ways of seeing things. It also definitely gives me food for thought when considering things that may help my son if our current approach falters as he goes through his teens. I hope my replies to you haven't hijacked the thread.

My middle daughter has left me battered and bruised on multiple occasions and has been able to overpower my 5ft2, skinny ass since she was 7 (and she was/is also tiny) - ND rage is the equivalent of Bruce Banner turning into The Hulk.

She has Dxs of ASD/ADHD, as do I. I’d say we’re about 50% the same in terms of presentation (eg sensory overwhelm equals angry outbursts, anxiety results in angry outbursts), and 50% entirely different. I’ve never been violent, she was, for quite a while, until I figured out what was triggering it (the list was quite extensive and ever changing).

She only got those Dxs after we spent a year being fucked around by CAMHS/ND services - ping ponged us back and forth, despite strongly worded letters from me, the school, our GP and the MH nurse at our GP practice. It was a shit show.

She ended up seriously self harming at school, I then applied for DLA as I had to drop my working hours, I couldn’t leave her alone for even a second because ordinary house hold items because self harm weapons in her hands, I had to sleep on her bedroom floor (not that she slept much). She was awarded it immediately without an appeal, high rate, and I spent the back pay on private doctors and therapy.

I’m fairly sure without that, she’d have continued to deteriorate and I’d probably have had to bury my child.

I also have CPTSD that mostly manifests as extreme anxiety/panic that needs controlled drugs to keep it under control. Finally getting the right Dx and meds has been life changing. I was just barely existing before. I was exhausted from suppressing it all in front of DDs.

Now I actually have a life. I’m able to understand myself and my daughter much better, and I’m able to deal with everything much better.

Therefore, I wouldn’t hesitate to ask for medications to try if her anxiety ever gets wildly out of control. Due to the massive benefits I’ve had from it.

She’s 14 now, and I’m fully braced for the shit to hit the fan when she starts her GCSEs next year, because she will be in all top sets, the demands will be enormous. To the point I’m going back to Uni next year to start my PhD (fully funded student ship) because it’ll be easier to juggle that alongside her needs than it will be to juggle my job.

I’m a lone parent and her Dad “doesn’t believe in ASD/ADHD/MH issues”.

I can’t recommend Young Carers enough, they were a God send to my elder and younger DD, gave them a safe space to vent about their sister, gave them opportunities they wouldn’t have had etc.

My DS's room is a nightmare!
I've been itching to get in there for the last three years to clean it & declutter. I can't. He trusts me not to touch ANYTHING. Since lockdown, he's developed OCD & there are piles of tissues on his floor that he uses to grab handles, flush the loo etc - also goes through box after box of single use gloves, too.
We have SUCH a good relationship now, though, that if I say there's space in the wheelie bin & should I pass him a black sack to put the tissues in, he WILL! Doesn't sound much, but it's a major achievement.
PDA / ASD / OCD kids' mummies will understand!
We are goddesses.. :-)

DS is younger at 9, but his meltdowns are violent, I've been to A&E twice, we've had the police called out. He also won't bath or shower, our only current option for him to wash or change his clothes is to take him swimming as he loves it. DH takes him twice a week, which is tough financially.

That's all we have at the moment, is to try and find compromises that he can tolerate. We're on the waiting list for assessment, but it's over two years. He was masking well at school until this year, but is now school refusing. We are living on eggshells, trying not to trigger meltdowns as the only advice we have had is to avoid triggers. We suspect ASD, and PDA has been suggested to us.

@EilonwyWithRedGoldHair - You can apply for DLA, if you don’t have it already (that could go towards swimming costs)