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.

Personally I doubt it's PDA if he's doing well at school because he'd be avoiding doing anything he was asked there too as the anxiety would be too great

I had to come back to pick up on this. Not just for OP but anyone, Please, please, please don't measure anxiety or demand avoidance by what a child can do at school. It is this view that can cause so much damage. Not just for DC with ASD or PDA. There's an organisation called "Not Fine In School" so named to combat the phrase that parents get SO often when they raise concerns about what is happening at home "Well, s/he is fine at school ..." Just because teachers can't see the distress doesn't mean its not there. It may be being expressed at home.

It was a view from my dd's junior school that caused caused immense damage and 10 years down the line DD is still dealing with the trauma from that time.

My DD was using every ounce of demand compliance at school and was totally unable to cope with any other demands at all - eating, sleeping, washing, brushing teeth etc. etc. The tough love approach and attitudes such as "she needs to learn to cope in a world that doesn't lower its demands for her .etc. etc." came close to utterly destroying her.

The meltdowns were long and violent and it took years to redress the balance by following PDA specific approaches. People meeting her now would not believe what she and I have been through. She is a warm, sensitive, caring, wonderful 18 year old who works supporting others and is studying to get her level 3 in health and social care. She has not been in school since year 4. She will always be autistic and will always experience extreme demand avoidance but she has spent years learning how to be a successful PDAer not learning that she is a failed NT.

Life can never be demand free so the worry that you are pandering to a PDAer and 'enabling their behaviour' by reducing demands. Intrinsic demands are there from the moment they wake up before even thinking about demands of daily routines or social demands or learning or working.

I don't know if OP's ds has PDA but I do know that there is still massive resistance to PDA approaches because they are contrary to typical parenting and typical ASD parenting. But I can testify to their immense value and success. Its why timely assessment and diagnosis is vital.

@LosingTheWill2022

excellent post, My son has ASD, though not PDA. Whilst we had nothing like the level of problems you appear to have had, I absolutely recognise that 'but he's fine in school' thing - school in question being a special school.
Congratulations to you and your girl on achieving so much - it must be amazing for you to see her doing so well

Yes. I am delighted that the school can no longer keep saying "he's fine in school" after my teen BROKE HIS WRIST at lunchtime and school did not take any action because he was fine. Apparently when a teacher suggested going to first aid, he said "no, I'm fine", did PE with his other hand and then he messaged me to collect him early from his after school club cos his arm hurt. When I arrived, he showed me his arm and I took him to A&E where they did X-Rays to show the fracture (and said no sport for 6 weeks 😱). Sorry to derail your thread. Kids mask in school.

Ignore if I’m barking up the wrong tree but I didn’t see it confirmed. Is your DH his father?

My ASD child can’t tolerate the shower - it’s a sensory thing and he needs to have it marked in the calendar his bath days. We’ve had to work hard for him to agree to use soap and deodorant and he’s got an app on his phone helps ASD children with routines. There are however days he stinks…

Please don’t ever man-handle him into the shower again. It’s humiliating and belittling.

I’m autistic (wasn’t diagnosed until adulthood) and my parents watched some god-awful American documentary when I was a teen wherein the adults SAT on the “misbehaving” child until they calmed down.

They agreed they’d take that approach with me.

Whilst I couldn’t articulate everything I felt - I told them if they ever did that I would walk out the door and they’d never see me again.

I hope you can get some professional support and get your family on an even keel.

Thanks@Ted27 😊

sparkellie pda isn’t really diagnosed in the U.K.

OP, I have no helpful advice as I am also overwhelmed by the needs of my (diagnosed autistic, likely adhd and pda profile) child.

I get it. Completely. And sympathise because whilst my child is grubbier, scruffier and greasier than I would like, they do manage a couple of showers a week and maintain a basic level of hygiene (with meltdowns galore). I’m not sure what I would do if they didn’t.

We're looking into claiming but at the moment time is an issue. DS gets up about 6.30-7 and goes to sleep about midnight, is school refusing and DH and I have to juggle work around (luckily both WFH, with somewhat flexible hours) around supervising him.

Have you heard of a book called The Explosive Child - I think that might help you. At the moment you're doing plan A but they would recommend plan B. It's available on Amazon etc

If you're doing the DLA form, do you have the CEREBRA guide or any assistance?
cerebra.org.uk/download/disability-living-allowance-dla-guide/
Using the "correct" wording is key.

Make sure you photocopy/save your application for the renewal as well.

It is very daunting, but if you phone up for the form and then send it in within the required time period, they will backdate any payment to the day you phoned up.

PDA isn’t fully recognised in the UK, many “experts” don’t believe it exists as a separate condition to asd (I work in a special school so have been on plenty of trainings regarding asd), so getting help is very hard.
my 13yr old ds is ASD/OCD (diagnosed) so I competent get how hard life can be, although he is very different to the OPs ds - no violence but very touchy feely and struggles to keep his hands to himself which annoys younger siblings! Our issues are definitely more around food and, in turn, bowel issues.
as for personal hygiene- fortunately ds thrives with routine and has a shower every Tuesday/Thursday/Sunday. Now there is no changing from this plan - and he would not tolerate a wash on a Monday for example. But it works for now as puberty hasn’t fully kicked in so no sweaty armpits yet. I’m dreading that time and having to guide him through personal hygiene then. Now if anyone could give me advice on how to get him to poo more than once a week I would be grateful for that (you know your an asd mum when mr muscle toilet unblocker is on your regular shopping list 🙄)

so anyway, advice for the OP - maybe sit down with your ds and advise he need a regular wash and come up with a timetable/routine to manage it? Make sure it’s fully discussed with your ds and explained why it is so important. Try and find out why he hates washing so much as well.

What about maybe helping him to work out a timetable?
Let him choose when the wash will be? Is it easier if it is done before bed or tea or in the morning?
Can he choose between a bath or a shower?
It sounds awful. I remember when my ds used to refuse to wash his hair (also autistic). We got round it eventually using a wet flannel gradually to wet his hair and then used a shampoo bar and rinsed off squeezing the flannel. He eventually adapted and now washes fine. It sounds more like it's a control issue for your ds though so maybe you need to look at how he can have the control back but still get washed.

@TillyTrauma if your DS is also ADHD have you looked at rejection sensitivity dysphoria? It means that any perceived criticism or refusal such as saying no to something or you need a shower (because you’re not clean) can cause huge emotional pain which can translate into physical violence or rage which are totally out of proportion to the comment made.

Hi OP, just wanted to send sympathy and solidarity. NVR training is good. We used Jack at New Leaf NVR.

I participated in a university research project into families who experience violence from their children. It's more common than people think.

Now we have a diagnosis and our DD's needs are mostly met, the violence is much reduced.

I like the book 10 Days to a Less Defiant Child, because it's particularly practical with helping parents to try different strategies to approach the problem of defiance caused by anxiety.

Hi,
I have only read half of the thread. I watched a YouTube video by Russell Barkley on managing ADHD behaviour and learned that extrinsic rewards work well. My son will do anything if I get the right motivation- money, food, gifts. I used to think that he should do it because I ask, but now I know that is how his mind works, I have made my peace with it.

I suggest that you tell him that his room is his and as long as you can shut the door, it’s his business (whilst offering inducements to tidy it). However the crockery is yours and you need it back. Never comment on room again.

Do everything by stealth, if he agrees to a wash or bath or shower for a KFC after or whatever, just go ahead with no comments other than a someone smells nice.

If he has ADHD, medication makes life bearable for all of you, but him most of all. Again don’t make a big deal about anything.

Tough Love unless you want him to be the stinking oddball on the bus when he's 40
You are clearly totally ignorant and talking bollocks.

@TillyTrauma , sending you solidarity and a bucketful of hope as my DD1 (very nearly 15) is violent, aggressive and verbally abusive. DD is diagnosed with ADHD and autism (most probably with a PDA profile but my local CAMHS does not diagnose PDA). She is also registered blind, due to her in utero experiences, and is adopted, and has a diagnosis of neonatal abstinence syndrome (like foetal abstinence syndrome but for drugs, although there’s likely plenty of that in the mix, too).

Honestly, as one who is going through it currently, I would urge you to read up on secondary trauma and blocked care. I have recognised a few adopters on here so they will be clued up on these ‘conditions’. Please, for your sake and your sanity, prioritise self-care. If you are able, then I would urge you to fulfil your need to escape temporarily in order to recharge your batteries. Extreme parenting of children and young people with significant needs is utterly draining and you can’t fill from an empty bucket.

Also, and I probably won’t make myself popular on this thread, but you and the rest of your family have an equal right to as happy a home as you can make it. Personally speaking, I would not tolerate a smelly human being in my home, regardless of diagnoses, and my DD has an A-Z compendium. Our children and young people will hopefully survive us and they do need to be able to function in the wider society, albeit probably on the fringes.

My DD is currently on a Child in Need plan with our local children’s services after she knocked me out once too often. I called the police and they were brilliant. Your local police force will have a domestic abuse unit and will have specialists in child on parent violence; I urge you to contact them. They absolutely do not want to criminalise young people, they prioritise early intervention work.

Also, I agree strongly with previous posters who have mentioned the long-lasting effects of witnessing these behaviours on your younger child. ALL children deserve to have a happy and safe childhood. I have a much younger child and I protect her as much as possible but my elder DD (and the various) professionals involved absolutely know that if she is harmed (significantly), then my DD1 will need to be accommodated by the local authority.

Also, just to echo the recommendation for The Explosive Child by Ross Greene, in particular. But I’m going to go away and explore my bookcase for more reading recommendations for you.

Lots of hugs. I haven't much to add. There are collapsible baths tubs you can buy. Family find may help you fund one.

I have a bright but very disabled autistic child. He is only primary school age but I’m dreading the teen years. You have nothing but my utmost empathy OP. I’d shout to everyone you can that you aren’t coping. Also make sure that your other children’s teachers know the strain they are under.

Swimming is the solution that works with my autistic DS. He goes at least once a week so never gets too stinky.

With respect I don’t think you have the faintest idea what having a child with these kind of needs is like.

Just to add, for those who think that these realities don’t exist unless teachers witness them, my DD is in Y10 at a super selective grammar school, where she is excelling. She masks beautifully all day long and then explodes like a shaken bottle of pop.

It’s not a quick fix, but if it is the shower that’s the problem and a bath would be more suitable and easier for DS you could apply for DFG funding for adaptations.