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.

would he go swimming?
can you sort his room and laundry while he’s at school?

Could someone at the school point out to him that he needs to bathe?

Is there any option for a residential school for him?

Just a word of caution.
Sitting down and discussing things ike personal hygiene would be a massive demand for my PDA dd. We approach everything more indirectly.
For example buying wipes, buying a flannel, buying body spray and leaving in the bathroom.

School pointing out the problem is highly unlikely to help, in fact will just add to the pressure he's feeling about it.

Someone with pda often finds it hard to do things they even know they need to do/want to do if they feel any pressure to do it. It becomes overwhelming and stops them trying.

I'd second joining some groups where others have experience with PDA as general parents won't have that experience.

A Diagnosis should open up more support.
It didn't for us but we live in a very backward part of the UK.

I have a child with Autism & PDA. Low demand is crucial to dealing with this but it is a problem if a person starts to really stink as it creates sore skin, & bullying at school / work (& even more social isolation) so you need to do something ...
A bath can be much less 'bite-y' than a shower.
I take it a public swimming pool is out?
Probably a soap & flannel wash is best then plenty of deodorant.
Can you agree to at least 'air' the clothes on the washing line to freshen them?
Can you choose some new soft ones of choice to be 'worn in' before the old ones are washed ? It's very hard. Both my Autistic kids would rather cut their (long) hair off than brush / wash it. ooof.

butterflybiscuit - likewise DS loves school but is mentally wrecked by the time he gets home and he explodes. and if he cant wake up naturally in the morning we know it will be a bad day.

Can anyone signpost me to go support groups/good websites on PDA so I can have a read before he comes home and try and work out where we are going wrong in implementing it?

Thank you all for being so supportive. (except the obvious one who I have no intention of engaging with)

I was referred to an NVR parenting course (non violent resistance) through GP/CAHMS available through my Local Authority when my son with ADHD was displaying similar. Google if there is one available in your area.
6/8 week course with other parents in the same position. Sounds like the low demand approach others have mentioned and offers helpful ways to support yourself, your child and your other children/family members.

This would be my instinct. My son has asd and he can find showers very difficult.
My advice would be not to get in a situation where you are trying to physically force him to do anything, as that only adds to the issues going forward. Also have you tried offering a bath that he can stand in to wash? I'm presuming he is verbal, as he's quite old to be undergoing diagnosis. A non confrontational talk when he is calm about understanding that he finds this a difficult area to navigate, what would he find easiest, and possibly offering some suggestions if he doesn't have any. Hygiene is non negotiable to some extent, but it can't be forced. Small things like using a flannel every day on whichever is his least sensitive body part, and working your way up to other bits. Be consistent. You do need to be patient though. Don't expect overnight changes. I do understand your desperation, but he will sense that too, and it may worry him.

(Not the same issue but we also had explosions after school that were hunger driven. She doesn't recognise hunger really and sometimes didn't eat lunch if it didn't look right ) so in our case we don't quiz her if she's eaten anymore just leave something on the side in the kitchen so she can eat when she comes in if needed and that reduced some of our after school issues. That and no questions at all - no "how was your day" at least until she'd come in and decompressed.

I know all kids are different and you might know this already but I wish someone told me!

more thanks yous, the advice coming is great and reassuring.

he threatens not to go to school if he thinks i will enter his room while he is not here. I think i need to get him to stay away overnight with my parents and tackle the lot so i will have no reason to go back in his room after that.

interesting about the sensory side of the shower (although he's in there for half an hour if he ever does get in there). we dont have a bath. will get a 'bits and pits' basin and flannel for him.

interesting about talking making it worse, i thought giving hjim more say would help but perhaps that is overwhelming in itself.

swimming is genius! i will look up swim times and see if we can fit that in.

Start with the PDA Society website and join so you can read/ write messages on the forum.
Have a look at Harry Thompson The PDA Extrodinaire - book and fb

OP that is a great idea.
Maybe say: 'crikey we are SO sorry we pushed you too far. we were so worried about you getting sore & uncomfortable from being unwashed but that wasn't the right thing to do & we WON'T do it again. But we'd like to find a way forward together that makes it easier for you as things being smelly is hard for you & us'.

Can we ask if there is anything we CAN do to help it be less difficult for you?
can we leave a tub / some nice oils / soaps by your room?
would you like to choose some fresh soft clothes (on an amazon account?)
whilst we air out your current ones? would you like some new soft bedding?

I've had to be direct with my kids as I am doing it from a place of love.
Other people (especially at school) won't be.

@ProFannyTea Do you honestly think there are many teens who would get to the point of not showering for 3 weeks and smelling? Having worked with teens for years I can tell you it’s rare, and almost always in neurodiverse children, because those who are neurotypical aware that they will be bullied for it. This is clearly not a parenting issue.

And society doesn’t ‘thrive off labels’. Lots of people are as judgemental as you and think it’s just a ‘naughty child’ that the parents ‘can’t control’. Perhaps if you don’t have anything supportive and helpful to add it would be best not to comment.

OP, could you persuade him to sit in the bath or just wash at the sink with a flannel, with your DH supervising or helping him? If it’s still a sensory issue for him then maybe with a distraction? Headphones and music or something to watch and DH could give him a wash? Not ideal but at least it may get him mostly cleaned and if he’d agree to that regularly then it may help keep on top of it.

he is verbal - he's our eldest and gifted so we had nothing to compare him to so didn't realise he was cleverer than average (his first primary school were crap) until our next child came through which showed us how advanced DS was academically. Then with covid lockdown we thought the escalating behaviour was a reaction to that. then hormones kicked in and we now have a perfect storm. we've been persuing help and aiming towards diagnosis for over a year now.

We’re in the middle of a 6 week block of occupational therapy (I expect to be offered another in about 4 years based on experience so far) and we’ve created a sensory profile of ds, and now we’re working on having a shower.

The OT sat down with him and had two sheets of paper - one with a thumbs up for regulating experiences (that make you feel calm), and one with a thumbs down for dysregulating experiences. She had a bunch of pictures and words cut up, and as they spoke, wrote in a few more.

They segued into a long discussion about showers, talking through the different aspects that make it difficult with the aim to make the experience a bit less awful which is a very different goal from shower more often, and takes away the judgement, and focuses on his experience.

In practice, he’s doubled down and is being even more difficult than usual, but that’s always to be expected. I’m reserving judgement for now as it’s only week 3.

I’m sharing this because it might be a helpful approach, but also because it’s very hard to make suggestions without first understanding what’s going on for him. I really liked the OT’s approach. It’s not easy to discuss hygiene with a teen but she did it in a very respectful, curious way.

I think that’s a key thing with our kids - they’re not being difficult as much as having a very difficult time. That was so obvious to me when we created the sensory profile - there were just so many profoundly irritating and upsetting everyday sensory problems that he was dealing with.

Of all the services we’ve had, I’ve found OT the most practical. If you can afford to pay for it privately (or can get it part funded through a charity) I’d really encourage that. Or take a look at it websites for ideas and suggestions.

I think i need to get him to stay away overnight with my parents and tackle the lot so i will have no reason to go back in his room after that.
I would strongly urge you not to do this if you truly think he has PDA. The break down of trust could be catastrophic

Been there got the badge and risperidone was our answer. They were already on long acting ADHD meds but they needed something to deal with the aggravation/aggression caused by the ASD.

If this hadn’t of worked then they wouldn’t have been able to live at home as we have other children that needed to be considered.

Not all medications are suitable for all individuals and this is no different. Luckily it was a great fit for our child - they slept solidly for 2 weeks and then went on as usual but without the aggression and were much happier in themselves. It meant they didn’t get expelled from school (was going to happen); could play a team sport they loved (were going to be banned); were able to make meaningful friendships/interact/integrate; were able to live as a member of the family; has led to them being able to do a great degree and work in a prestigious career role they are doing well in. 15 odd years on they are still on it, no issue per yearly blood tests, they are energetic, super slim, fit and are still full on in the team sport they love and have heaps of hobbies and friends. Getting the dose right was key and we had a shit hot dev paed I would trust with my life (and indeed did trust with my child’s). The key is someone super specialised in prescribing meds for this group of children as not all dev paeds are created equal and thus can cause issues.

he is better with me than DH so I do most of the chats/support as DS reacts very negatively to DH. our support worker thinks this is a reaction to me being the at home parent and DH being at work so DS somehow doenst recognise DH as an authority figure in the home.

Yes please DONT go and tackle his room. That really will break things down between you. It's his safe place currently.

I love 54s wording and is a really good example of talking about things in a non confrontational way.

And the OT experience above is what I was thinking of as being useful. Their approach is usually fantastic and the idea of least awful means you're not battling into a shower straight away.

If he feels assaulted from you forcing him into a shower that may also take quite a while to come back from/regain trust.

It really is a completely different mindset to patenting like this and understanding just how different their mind works and how much you need to think differently

There is a fab book called The Explosive Child by Ross Greene which night be helpful.

Putting a paddling pool in the shower floor is a solution to not having a bath . Just in case that helps with any sensory issues.

I don't think you should feel bad about putting him in the shower last night. It's the old saying that sometimes you have to be cruel to be kind.

Agreed. Definitely worth a read

We used to go swimming several times a week. I don't know if that would be an option for you. Also swimming lessons. You are required to shower before entering. There is a sign. You can't argue with a sign.

At home, wet wipes might be acceptable if there are sensory issues with water on skin.

You do need a lot more support though. Have you put your name down for carers assessment, may be young carers support for siblings. I do agree they seem most vulnerable here.

I think i need to get him to stay away overnight with my parents and tackle the lot so i will have no reason to go back in his room after that.

Get his consent first. Don't go in and rape his room when he's out of the house. The sense of violation when someone touches your stuff, it's traumatising and I'm not exaggerating.

Explain to him that you need to clean the room so the house doesn't smell or have bugs. Ask him if he'd be willing to go to grandparents while you do that. Give him a 'safe place' somewhere else in the house where he can put a few precious things overnight while you work on his room.

Just to add to my post about NVR...parental presence is key..,just being with your child and letting them know you love them is so important. (I know that sounds obvious but when you're stressed and at your lowest it's hard to be present for others).
Just sitting with your son in his room for 5 minutes, watching the same tv programme, taking an interest in his interests, and doing random acts of kindness...like bringing him his favourite dinner, ordering him a book/game he likes, doing something he wants for him even when you can't be bothered etc...are all important to rebuilding and strengthening your relationship. Letting him know that you love him and you are interested in him and want to get to know him better, and that his challenging behaviour doesn't change that. Let go of the notion of whether he 'deserves' something or not based on behaviour. (Not saying you do that, but I did and it was so helpful to me and my son when I let that go)
Those are the fundamental building blocks before you start approaching the bigger problems.
Sorry if that sounds patronising in anyway, but it's those simple things that I actually realised I needed help with and what began to make the biggest changes.
My son learned to trust me and understand that I was on his side, not against him.

For what it's worth, I was in a similar position to you around 18 months ago and since then my son has thrived. Found a college course he loves, joined the gym, found a love of martial arts and passed his driving test first time. He's doing so much for himself and I never thought this day would come...so hang on because yours and your child's will too x