9yo AuDHD PDA is a total space cadet and full of attitude

[SoTiredSoTiredSoTired]

DS9 (AuDHD, PDA) is SO HARD to keep on task. He daydreams constantly, he just never does the thing he's meant to be doing. If pulled up for endlessly wasting time and completing nothing, he yells back and lashes out, or tries deliberately to annoy and disrupt. He got kicked out of school at age 6 for the deliberately annoying disruptive behaviour. Now no other schools in our town will take him. We are outside the UK and there is zero support for academically able children with ND or behavioural issues.

Three years on, I still have to sit next to him the entire time he's doing schoolwork to keep saying "stop staring out the window", "come up with something", "pen on paper", "come up with an answer", "write the sentence", "do you know what you're meant to be doing?", "Time to stop, we've run out of time". He used to read avidly, but these days can't read a sentence without just staring out the window.

Unsurprisingly he constantly screeches back at me telling me to shut up, then goes back to daydreaming. He hates me and tells me I'm not a proper parent, I'm mean and horrible, because I constantly make demands on him, such terribly mean things as eating food he likes, doing schoolwork (that he says he likes and finds interesting) and extracurriculars (that he enjoys), making him put on shoes to leave the house, giving him chances to interact with other people, all that kind of horrible stuff that abusive parents do.

I guess because DH makes no real demands on him, DS doesn't hate DH. DH is the sole wage earner (I do the homeschooling) so is out of the house all day. He takes DS for an hour or two each evening and teaches him things like programming and electronics. Absence makes the heart grow fonder.

Medication makes DS way less hyperactive, emotionally volatile, irritatingly goofy and inclined to deliberately annoy, but honestly it doesn't seem to help at all with focus (obviously an ADHD symptom), or his constant resentment of me (probably a PDA symptom).
He is medicated with 60mg Vyvanse (Lisdexamfetamine) + 10mg dexamfetamine late in the day. We have tried everything available (all dosages of all dexamphetamine and methylphenidate formulations, clonidine, atomoxetine...) except getting a special dispensation for Guanfacine, which isn't normally prescribed where we are.

Any suggestions?

I honestly despair of his future. He's bright enough and interested in things, but the total absence of executive function combined with the PDA antagonistic streak... arggh.

Does the zero support where you are extend to independent private providers? I think DS would benefit from an ed psych assessment, OT input, and he gets older, probably ADHD coaching. If these aren’t available where you are, you could look at online providers in other countries if you think that would work.

Some people find non-violent resources useful. Some find the books, The Declarative Language Handbook, The Explosive Child and the Out of Sync child helpful.

If you haven’t already, it is worth looking at rejection sensitive dysphoria and equalising behaviour.

Yes, I know it's equalizing behaviour. However, I have no choice but to educate him, feed him etc. So yes, I'm making demands on him.

What does a low demand lifestyle look like in the context of me being put in jail if I don't feed him or educate him?

What does it look like when he reaches adulthood uneducated and unable to do anything for himself, and unable to function in society? We have no family who can care for him. Residential care here is not going to be awarded to someone who is very obviously neither physically nor intellectually disabled. Residential care for people like him ends up being jail.

Yes, I need to find find a decent OT who has a clue about PDA (there aren't any here) and an ADHD coach (it's not even a concept here, they're just "lazy", "not into academics" and "born bad").

I didn’t suggest you don’t feed him or educate him. (Although education may not look like traditional education e.g. many with PDA need self directed/child led learning. Some use assistive tech so e.g. there is no need for the pen to paper demand.) Neither did I suggest low demand is the same as no demand or would leave you in jail.

The thing is, I am already accommodating him constantly. Literally my entire life is devoted to helping him - I get no time off other than to cook dinner and prepare for the next day's homeschooling while DH has him in the evenings.

He gets the food he wants, when he wants, but doesn't want to eat. He gets offered other food, he still doesn't want it. He is below the 0.5th centile for BMI. He won't touch things like energy drinks. Hospital dietitian made it worse by saying he'd be force fed in hospital if he didn't eat.

Same with education. He's allowed to do whatever subjects he wants, when he wants, as long as he does something (and yes, that does have to include output, since just reading or watching doesn't go in any more). He's allowed deep dives into things that interest him, he's allowed to drop things that no longer interest him, he's allowed to do unit studies and classes on things instead of conventional schoolwork. He uses the technology he prefers, which happens to be books and putting pen to paper (learning to type is too big a demand and he recognises he can't concentrate with a digital device and all its distractions). But it's still too much - he takes in the material, and talks enthusiastically to others about it, but it's also all about how much he hates me for making him do it.

Does DH not have days off work? Hold you have some time away on his days off?

I feel I am being misunderstood. I didn’t suggest just reading or watching was the way to go. Output doesn’t have to be DS putting pen to paper. For example, has he tried dictating to you to scribe. Or speech to text software. If DS can’t manage with access to a device such as tablet or laptop, then he could dictate to a dictaphone (and have it transcribed if you need written record). But, actually, in the UK, some DC with PDA don’t produce written work in that sense. I don’t know what the EHE rules are like where you are, though.

For the eating, have you looked at ARFID? If there isn’t someone in your country who can help with that, this is something else you could look at privately online if you can afford it. Rachel Bryant-Waugh is one of the leading HCPs in the UK dealing with ARFID, she wrote a book called ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers. Gillian Harris is another one of the leading experts on ARFID in the UK and with Elizabeth Shea they published the Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions book.

Where we are, homeschooling is currently unregulated, but this is changing, and moving to an annual audit system where you have to demonstrate that the child is being taught through the year, as well and as often as they would be in a school (no disingenuous interpretations of the quality of schools' teaching permitted). This means there has to be demonstrable output available in all areas of the curriculum, available to be checked, for every school week of the year. We will also have to produce annual plans and reports detailing how the plan was executed, with loads of supporting evidence. While they probably can't prosecute for years before the legislation went through, lack of evidence of work in earlier years will definitely contribute to an unfavourable outcome.

I actually think this kind of oversight is a good idea, though the administrative burden is going to be a nightmare.

But what this means is DS needs to be producing visible output every week of the school year. He won't dictate - the demand is coming up with the language - he prefers to write autonomously. But then daydream-procrastinates instead. Hence the conflict.

Yes, I got the referral to the dietitian because I suspected ARFID. But the view here is that ARFID is just autistic children who will only eat chicken nuggets - so DS refusing to eat either had to be anorexia nervosa, or he was a spoilt brat with an anxious mother. So it was "Make him drink pediasure, he'll hate it and go back to eating properly".

i'll get the ARFID books and see if they have anything new to say. But I think it's to do with him having no spoons* left to eat because the rest of his life feels like something he has to fight against so much.

*spoon theory, not literal spoons

Can you hire a tutor(s) for core subjects? I've just started down this path because my mental and physical health has had enough. My son actually sits quietly and listens to the tutor.

A tutor would be good, but even if we could find one (where????) we can't afford something like £20 an hour to cover all areas of the curriculum 5 days a week. I take my hat off to you for having made that step - it's something I fantasize about.

Oh, right now it's 1 hour per week. I plan to get up to 3 hours/week as I can't afford more than that. But it's better than nothing. Would he manage online tutoring? If so, there is plenty to choose from. (My son probably wouldn't though!,)

I've considered the various online school options: most wouldn't work, a couple would but only start at year 7 level, so we'll have to wait. For the moment we do a correspondence school based in the UK. He also does online zoom classes for homeschoolers in specific areas of interest.