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.

I would enter his room to clean it while he’s at school. It sounds like the situation couldn’t get much worse. At least he’d be clean. If he loves school as much as you say he does, he’d be reluctant to not go.

You need someone to come in who can get him to speak about why not showering, etc and what he needs to be able to shower. You need help urgently. What can you afford? Can you go privately at all? You need to get on top of it now. Otherwise I can see your only other option being residential placement down the line.

If he loves hiking, can you get him to agree to shower afterwards as the condition? Or does he really like it but it forced to go?

I’m so sorry you’re going through this. It must be so hard.

Also please do NOT enter his room to clean it.
Your son being able to trust you is more important than a clean bedroom.

Omfg.

The Autism Discussion Page on FB is good - and all 3 books really easy reads and helpful. The 3rd one on anxiety and meltdowns would be particularly relevant.

www.amazon.co.uk/Discussion-anxiety-meltdowns-emotional-regulation/dp/178592804X/ref=asc_df_178592804X/?tag=googshopuk-21&linkCode=df0&hvadid=382849430348&hvpos=&hvnetw=g&hvrand=8393428161570478280&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007014&hvtargid=pla-820044674879&psc=1&th=1&psc=1&tag=&ref=&adgrpid=77651038745&hvpone=&hvptwo=&hvadid=382849430348&hvpos=&hvnetw=g&hvrand=8393428161570478280&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007014&hvtargid=pla-820044674879

It sounds as if you are reaching crisis point.

We experienced similar with our eldest, who was slightly younger at the time at 10 years old.

PDA approach is going to be hands off. Yes he stinks but he's not actually hurting anyone. If suggesting he cleans himself results in violence then let him stink. You might just find if you back off completely he will start washing again. Agree with the PP who said leave wipes and deoderant but other than that don't say a word as it will make it 'an issue'.

You have said that he is going to be assessed but this won't solve your immediate issue, I also felt like this. Have you applied for an EHC Needs assessment for school, whilst he is intellectually capable he clearly needs support and it might be that some issues at school are also arising. Can you speak to the CAMHS crisis team to ask about whether they are able to diagnose and treat anxiety before the other assessments take place. PDA is anxiety driven. My son found a dose of Sertraline very helpful.

I don't want to worry you but my son ended up completely breaking down and ended up out of school completely, unable to leave his bedroom for 6 months, after a period such as the one you describe that you are experiencing now. However fast forward 6 years with a completely PDA parenting approach he did well in GCSEs and has started a selective 6th form and is completely off all medication. I could never have foreseen that when the wheels fell off for him.

Ultimately my suggestion for now is that as long as he, and you are safe, nothing else matters. My understanding is that some local authorities offer respite but he may need to be in receipt of DLA , if you haven't already done so do apply for it. He is entitled to it. It may help pay for some private assessments or treatments if necessary.

Good luck.

thank you again, some really useful and supportive messages.

The room - currently you cannot get in it, everything he owns is all over the floor. i have asked him/talked with him about all the options - me doing it, me helping him, him staying away while i do it, doinng 15 mins a day etc. he refuses all options. i know you are all right about the breach of trust if i ship him off and do it without consent (thats why i havent already done this) but again i'm out of options -there are old bowls/plates with moulding food on them as well as dirty clothes etc. he wont even permit me to enter the room. he says he wants to do it but he;s been saying that for over a month now. genuinely concerned its a health hazard.

appreciate all the tips and ideas. he gets time with us when the younger ones are in bed to choose a show/play a game/have cuddles etc every night and i've been working really hard at praising any smal positives i see. yes I have let go of the good behaviour=reward as it doesnt work for him, he will get little treats as and when - sometimes i can time it to distract him from a flare up.

Do you feel better about yourself for posting shitty comments like that? What an ableist and ignorant person you are.

I pray you never have a loved one diagnosed with ASD.

OP, ignore this pathetic troll.

OK, so he tells you he wants to do it, you need to find a way to facilitate that. Every time he goes in his room he takes out 1 dirty plate/bowl and gives it to you, until there aren't any left. Again, just make it part of his routine. Then you move onto a piece of clothing etc. Baby steps. Don't try and do too much too fast. I know the inclination is t get it over and done and try and start from fresh, but the reality is that the sudden change would potentially be very overwhelming for him.

thank you for the links. i will do some reading. I have read the explosive child but whilst i could say 'yes thats like my child' i didn't find it useful with how to actually move forward with helping him. I will look at the other things suggested.

Thank you for the reassuring stories about your DC who have come out the other side of this. i'm sorry you've also had to live it but its very heartening to know there is hope.

GP is not being overly helpful at present. but willing to see the report when it comes through and refer if thats the recommendation ofthe report.

Haver arranged for my younger DC to stay with grandparents tonight so need to go pack things for them but will be checking back in when i can.

sparkellie that is a good idea. this is the stuff that really helps as for me, i would want to get in and get it done so really struggle to see how to make the steps small enough that he can cope. i'm the polar opposite of how i approach stuff to how he clearly needs to approach so it is extremely hard and at times overwhelming for me to override my natural way to want to do things,

I was thinking ODD too….so sorry you are dealing with This op

If he wants to do it, and the floor is covered, would structure be helpful. Sometimes literally not knowing where to start. Have you tried, for example, placing a washing up bowl in an agreed spot in his room. He can put his used items in and you could take it each night. If he is agreeable to this, I would just do the dishes for the day until it's established then work on the backlog. If you allocated a "washing day" and put a basket outside his door, held out the basket, would he place some items in it for you to wash. No drama - just part of a normal putting on the wash. Sometimes I go and ask for e.g. "white things to make up a load" and thank him, if he can find any laundry to contribute. If he likes routines and you can set up some routines and structure that may help.

More radical, if he doesn't mind about sameness, would he like to re-decorate his room now that he is becoming a teenager. That would require a clean-up pre-decorating and you can arrange the storage and laundry arrangements when planning the re-vamp. This idea sounds unlikely to me, but I think it's about noticing how he usually behaves and seeing if you can tweak it or tweak something you do to make the behaviour more as you would like it.

No problem. It will get better, and he will start to cope with more/bigger things in time. Honestly, just start small. He will see the benefits.

Re the shower, I would be inclined to angle the shower quite close to the wall so it’s not spraying all over the wet room, give him a flannel and ask him to wash himself using it while standing next to the shower. He may gradually get in, with the expectation removed.

Sometimes it's the feeling cold and wet when you get out of the shower. It depends what is bothering him the most.

Is he not bullied at school if he stinks? Would a teacher have a word with him, if he is compliant for them?

In regards to the bedroom, pick your moments.
Chose a time when your child is relaxed and gently broach the subject.
'Hey, I was wondering if we could talk about your bedroom?' and see where it leads. If you get a 'no' then a simple response could be 'ok I respect that you don't want to talk about it right now, let me know when you feel ready for a chat about it/I'll ask again another time'.

Or you might get a response that engages further conversation in which case you could ask if his room bothers him and try and get an understanding of what his room and the state of it means to him.

Don't expect much! Tiny tiny steps, building trust and opening conversation. It could take weeks/months before you even enter the bedroom but each chat is getting you there.

Take it slowly and let your boy learn to trust you. If you say you will/won't do something then make sure you follow it through each and every time.

Have you looked at Yvonne Newbold’s resources?

Push for social care support, you absolutely do qualify, but like everything you have to fight for it.

You should apply for an EHCNA for him.

For younger DC, your local young carers services and Sibs can be helpful.

This is a very ignorant view. Look up masking and the coke bottle effect.

For ADHD symptoms must be present in more than one setting but that doesn’t mean the presentation has to be the same in both settings.

I have looked up these issues actually. It doesn't change my opinion.

If you haven’t already, get a referral to Young Carers for your other children. They provide amazing emotional support, various clubs, day trips out etc - things they miss out on due to an unpredictable sibling.

Then it is an even more ignorant view.

Do you think the same about other disabilities? Like those with a hearing impairment who struggle to hear in some environments but can manage ok in others. Or those who are only part time wheelchair users but can manage ok other times. Or is it only ND conditions you discriminate against?

It's great he's keen on doing his room!

I know something like "tidy your room" can be sooo hugely overwhelming to someone with executive function issues and its worth thinking of all the little steps that takes.

Together work on a small tiny step - so it might be bringing dirty mugs out, or some dirty clothes in a bucket. Something very easy to understand and easily achievable.

Saying "can I come tidy your room" is overwhelming. But he may allow you to take dirty cups if that's all you do that time. Another day take dirty socks.

Don't overwhelm with a "plan" or schedule but if you van regain trust and then agree little tiny achievable things towards his goal it can help. Sometimes they think it's all not good enough and give up - its so hard when doing it in one go is overwhelming and you can't see benenfit of tiny steps.

It will make SO much difference if he feels you are on his side and working together rather than imposing tasks. Maybe give it all a break for a week (and an apology as per above) and then say you want to support him would this tiny x thing be okay? It may be no at first but once he realises you are going in and not destroying his room just taking out cups/clothes/whatever you agreed it will build up trust.

Sorry I have only just skim read thread. It sounds very familiar, although my son also has learning difficulties rather than high functioning.

agree with low demands. We always tried to explain our reasoning but were told by CAMHs that was actually making things worse. It was more stressful for him discussing things. And we were told never to ask how his school day went. It just seemed really unfeeling but he struggled so much with school that when he came home he needed solitude to decompress. when you have children like ours you just have to do things differently! It’s just so hard with trial and error to find the thing that works for your child

my son is now in college two days a week and he knows he has to shower before that but on the summer he can easily go a week or more. I do pick my battles. . Don’t get me started on teeth cleaning. I liberally douse his nylon uniform with Lynx before he sets off!

what sort of worked for us was choice and nudging. ‘Shall I run you a bath or do you want a shower’

he hates getting in but once he is in the shower he will stay for an hour or more!

it’s exhausting and I do worry about the effect on the others. Social services came and went for us without any help so it’s good that you are finding the support useful.

Unfortunately you’re not alone. I am sure in the time it has taken to type this someone has suggested Yvonne Newbold’s resources on Facebook. But if not it’s well worth a look. Think it might be called Newbold Hope now. But she does online courses and talks etc and it’s a very supportive community.

He needs an outlet for his emotions. That will come where he feels safest. Do you not believe that to be true?
I understand you have looked up the issues, but have you lived with them? Either in yourself or someone you live with?