DS9 AuDHD/ PDA, I can't cope with him

[BurntOutParent]

Son, 9, AuDHD with a large dose of PDA in the mix, cannot function in the mornings before ADHD meds kick in. He is "tricksy", a "funster" (in PDA parlance), constantly not doing what he's supposed to and doing what he's not supposed to, making offensive noises, trying to annoy (mostly me, but for a dopamine hit he's quite happy to also annoy his dad, and the neighbours). He was also like this at school, to the point of getting kicked out at age 6. He is now homeschooled as we have no other options (we are outside the UK). I hate homeschooling him, but the only other option is the correspondence school, which is absolutely dire and is effectively homeschooling anyway because it's so inadequate.

Some of the behaviour is that he sees toileting and eating as demands to be avoided. Some of it is probably that he resents being sent to the toilet because he doesn't have the interoception to work out he needs to go; and that the sensory demands of eating before ADHD meds have kicked in are too much. School was definitely too much for him.

The only way I can get him to eat is to ignore the constant barrage of antagonism, and literally hand him every single spoonful, while holding a novel for him to read. This takes hours (2 hours for one piece of toast and some fruit). By the end of it the meds have kicked in and he's ready to be human. But this is 2 hours of unpleasant stress that could valuably be used on other things.

The PDA antagonism is also making me sick with stress. I have developed IBS, migraines, high blood pressure, fast heart rate, angina. Everyone tells me to reduce sources of stress. I point out that the source of stress in my life is one i can't get rid of and am stuck with, 24/7. THere's no respite care and family don't help. My husband works 24/7 as the sole provider (and because he wants to escape - frankly I don't blame him).

I feel your pain, I really do. No one on this god damn planet understands unless this is their life.
my 13 year old daughter and my 9 year old son are very similar. 13 year old has been out of school for a year and it's caused hell. I understand she struggles hugely but the never ending demand avoidance is a killer, my son is now showing a lot of these traits.
theur dad also works away which is sometimes a blessing as he can really struggle to understand.
i find salvation in my close friends and family, as many walks as possible, coffee, nature and reading.
no advice but you are not alone

For the toileting, would DS use a bottle &/or commode? For some, this works. For others, it doesn’t.

Is there sensory OT where you are?

What meds is DS on? Would a change of meds help? Some find non-stimulants (either in addition to some stimulants or instead of) avoids the horrendous tricky mornings.

How is DS’s sleep?

I hear you! Sending solidarity. I'm so, so tired. Everyone keeps telling me "you're doing the best thing for him with homeschooling" but it's destroying me and I am so tired I'm no longer on top of it. He's falling behind in maths, which is supposedly his best subject, and I don't have the gumption to get on top of it.

No, it's the demand rather than the method - anything would get the same response.

Sleep is OK (knock him out with 8mg delayed-release melatonin and he stays asleep til 7am ish)

Meds are a major problem. He's on 60mg Vyvanse (as a single dose) which is ideal for mental clarity, but he metabolises it so quickly it only lasts about 3 hours. He desperately needs something else on top of this. Paediatricians where we are refuse point-blank to prescribe anything else though, as they love their 2001 guidelines that say children must be given doses of 10mg methylphenidate and that is absolutely enough and anything else will cause addiction and growth problems, and combination therapy definitely isn't even a thing. idiots

No useful OTs where we are, but even if there were... "can you help us with DS being a deliberately offensive arse with noise-making and demand avoidance in the mornings" is probably going to get a response of "you never stop an autistic child from expressing himself". Which isn't going to do him any favours in the real world in this area.

It might not work for your DS, but bottles/commodes work for some even when it is the demand. That’s because while you still have the demand of going, it can reduce some of the surrounding demands such as going to the bathroom and, for those who only have an upstairs or downstairs toilet, the demand of going up/down stairs.

OT can’t make autistic people not autistic, but they can help with regulation and sensory processing difficulties, including with interoception.

it occurs to me that pretty much all my frustration at DS stems from him not getting things done, that he should be doing, in a timely fashion. Doesn't really matter what the task is, he'll either actively avoid it (when meds aren't working) or be willing enough but so gormlessly slow and ineffectual about it that I just want to weep/ scream/ run away (when meds are working).

If I could somehow get him to take pride in doing things quickly, efficiently and correctly, then I think a lot could improve.

He takes pride in being a whizz at music, but it has yet to transfer to anything else at all. I have tried to extensively scaffold everything in the same way as I have for music, but... no joy on anything else.

@BurntOutParent if you’re still reading I’d get a med review like PP said

if Vyvanse metabolises quickly either his urine is very acidic (perhaps do those urine stick tests ) or he’s having high fatty foods with breakfast. Is he having it straight after food, with enough protein?

DS13 has high ODD but when stimulants kick in, he’s a gem! Most of the things you re raising (taking pride , achieving etx) will improve when Vyvanse kicks in properly.

He's always metabolised ADHD meds off the charts quickly, no matter what he's eaten. Vyvanse is just the most recent in a very very long list of meds tried since he was 4 and a half.

He has all the executive function and hyperfocus in the world for music, but nothing else, despite being bright and having a superb memory (even for the things he makes zero effort on, like maths, languages, history).

We have the same sadly hence my suggestions; doctors tend to not focus on nutrition that potentials the drugs so perhaps something to experiment on

Hey there. This sounds so hard - my son is also AuDHD with PDA profile and there were times the past year where things were so incredibly difficult I didn't know how to keep going. We are lucky in that the school he is in has worked hard to support him and pride themselves on their inclusivity so haven't been pushed to homeschool - although the summer term was hell - incredible distress for everyone getting him in to school in the mornings - him, us, staff. He is not on ADHD meds as this is till now the lesser issue but CAMHs did start him on fluoxetine for anxiety/mood a few months ago and honestly it has been life altering. We have gone from having a child who could barely leave the house - would go to school under extreme duress but literally nowhere else - no shops/parks/relatives etc. even things he really wanted to go to he couldn't due to a mix of panic/anxiety and not being able to cope with the internal demand. The medication - which is basically prozac - made a difference within days. I wouldn't have thought the level of difference was even possible - I feel like pinching myself to see if I'm dreaming. We managed a family trip for a few days at Christmas, he went without immense panic to a classmates bday party last weekend. He is still him, there are still challenges but the ease this has brought to us at breaking point has been extraordinary. I showed the consultant an academic study on use of fluoxetine in pda - small study and very recent so not extensive evidence - and they were willing to go with it. Onlu downside is ADHD is coming through more clearly now, increased energy, huge sensory seeking, but I'll take that any day over where we were six months ago when every day felt like a crisis. And soon I'm hoping to see if he is able to engage with OT around these things which he just wasn't able to previously. So with apologies for the essay maybe worth trying this with your kiddo if doctors will agree. I know all kids are different and maybe this isn't the answer in your case but maybe it is...