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.

Just a bump for you
No one should be in this position

Have you asked ss for help? Drastic but if you didn't collect him from school they would soon get involved..

My autistic ADD 14yo hasn't showered this year. They have thrived with very low demand parenting and now will have a wash of stinkiest bits with a flannel. Have a read of PDA support groups and low demand parenting. It is a really tricky life to lead and I fully get it with my house full of ND teens.

Sounds awful. Could he have pathological demand avoidance? Also hormones won’t be helping. No real advice but you might be better having your post moved to the special needs section as there will be posters there who will have probably dealt with similar.

Your biggest problem here is that your younger children are living with someone they are afraid of. This is incredibly damaging to them. You've got help coming for your DS, hopefully, but you should reach out to SS and let them know that your younger children are at risk. Speak to their school as well. That's likely to trigger more expedient support.

Is there an option to split the family? Your younger children deserve to feel safe at home. Can you afford to set up a separate home for you and your DH to take it in turns living with your son so your younger children don't have to be exposed to his violence and abuse?

Low demand parenting op.
Have a look at PDA and ODD as additional diagnoses. Your post is screaming them at me.
Over half term we’ve followed the book 10 days to a less defiant child, by Jeff Bernstein. It’s quite US based but those bits can be skimmed over. The difference in ds after just this week has been immense. A combination of lowering my demands, choosing how I react, and changing how I speak has made an enormous difference. It might not be the thing for you but I get the sense you’re willing to try anything? You can control yourself, you and DH, how you react then reflects on everyone else at home. Just an idea, anyway, and it’s helped us.
Enormous hugs to you. It’s so, so hard.
Make sure you take time for yourself too, where you can. You can’t pour from an empty jug x

I don't know what the answer is.. my youngest could lash out but as he's got older, it NEVER happens. I'm very laid back & let him make most of his decisions re his room, clothes, personal hygiene etc.. I ALWAYS keep lines of communication open. We chat about his interests & I can steer the conversation round to his ASD / OCD & I am careful to always offer help & understanding & try very hard not to judge.
He feels heard, & I'm just so grateful that all's well & no fallout!

Just read your post, @Blackalice , we sound remakably similar in our approach!

This sounds so awful for you, your DH and all of your children. I agree with a pp that no one should have to live like this. I’d have thought (and please forgive me if I’m wrong) if he could be found a placement at a specialist residential school. Does this exist any more, or is it what you’re already looking for?

I mean both for his own benefit and for that of your other children.

i guess the problem with splitting the family into two households is that it takes two of you to manage him. In practice it’d have to be your DH with him all the time, I guess, as it wouldn’t be safe for you.

I don’t have any solutions to offer, but I’m so sorry for you all.

@Cryingbutstilltrying I've never heard of low demand parenting.. sounds like what I've done instinctively.. off to read up on it!

My answer was baths only. You say you have a wet room so presuming no bath?

DS17 cannot tolerate showers at all as the sensory overload is just way too much.

It's still bloody hard though, it took me 2 hours yesterday to coax him in and finally get in the water but the process is much more relaxed than showering.

Don't get me started on having to shave him or cut his hair!

Society thrives on understanding not labels .
Your comments are ablist and unhelpful

And diagnosis aids understanding @ProFannyTea

@GertrudePerkinsPaperyThing I know you only mean well but you have not a clue of the guilt you are putting on a parent by suggesting that.

Like it is that easy?🙄

Do you not think us parents of kids like this do not face this every single day?

If you don't have a child like this please don't suggest it.

thank you for your replies.

to answer some questions - we have a family support worker involved who works with all of us. The younger children have My Plan plus in place and have additional councilling/suppport set up at school.

Social worker assessement came back as not bad enough for them so we got passed on to the support worker (who has been brilliant in fairness)

yes we believe its the PDA/ODD subsection of ASD that he has but its near impossible to get that specifically diagnosed. we are trying to parent him as if he has PDA but we are still finding our feet with it (very not our style but as mentioned, we will try anything) but the success is limited so far.

He is no longer required to do anything more than get up, go to school, shower and go to bed. but all of those are still a battle and he stank so badly, you could smell him from a distance and actually see the mud on him.

@ProFannyTea
they are not labels, they are diagnoses, its not about parenting problems

@TillyTrauma
this sounds awful for you, you went too far but you know that. You were at the end of your tether and no one who has been in a similar position will judge you for that. Don’t beat yourself up about it. Its happened - move on from it.
firstly get this moved to the SEN board otherwise you will get unhelpful comments like fannytea.
It does sound to me like PDA, whilst you are waiting for assessments I would assume thats what it is, and implement PDA strategies. They won’t do any harm.
It might also be worth looking at NVR ( non violent resistance) which is another set of strategies which look at de escalating.
Good luck

Just read a PDA low demand parenting article - it IS exactly what I've done instinctively over the years! It WORKS. :-)
As in the article I read, my DS is much more willing to, say, try different foods now. Zero pressure.
I hope it will work for you, @TillyTrauma

DH and I have talked about 2 households but its not financially possible.

Would he try wet wipes? Or a bowl of warm water in his room with a flannel.

You'd need to talk about it when he's calm obviously and with the heat out of the situation - but it may be that the whole thing has become so big that he's terrified to do anything.

I'd probably try to get a chat with an OT who is trained in sensory integration. They're so expensive privately but they are amazing and may have some ideas.

@WhosafraidofVirginiaWoolf Are you sure that’s meant for me? I don’t think I said anything that could make someone feel guilty - if anything the opposite as I’m suggesting that they should have a lot more help and support.

it's been a battle to get as far as we are with help as he masks so well at school - only recently has slight anxiety/ADHD traits started to show up there. its really like jekell and hyde.

those who have PDA experience - what resources have you used to base your parenting strategy off? we are trying to do low demand parenting but surely he has to get clean?! that cant be optional can it?

It wasn’t me who suggested splitting the family into two households, I was responding to a pp who suggested it.

i'm going to ask my parents to have my younger ones after school so DH and I can have some quiet time to talk things through with DS. he deserves an apology but we also need a way forward on the being clean issue.

I'd also agree with super low demands and trying to make life more manageable for him in any other areas he is feeling pressure. Even just way you speak to him etc.

You can be super clever, but still struggle with transitions/changes/sensory issues being autistic. Probably very easily overwhelmed by things you think are "silly" or smaller things to you.

My daughter is super bright but has told me how a full day at school (she loves school) takes it out of her - all the peopling/changing classrooms/knowing what to do all the time and she is exhausted in the evenings. She was a different child in half term when allowed to sleep in/not planned days out/etc.

Parenting a child or teen with PDA is not easy especially when you have other dc. It needs to be whole hearted. And it truly does work. It requires letting go of so much you thought was 'normal'.
Keep reading and join fb support groups. It's a lonely place because of people like @ProFannyTea but there's a community out there that will support you.