Meltdown Monday Pt. 3

Today we are talking about demands….or perhaps that should be….


They are constant and never ceasing. A deluge and barrage of them from the moment that we wake up…

Get out of bed. We’re running late. Put on your shoes. Feed the cat. Eat your porridge. What do you mean you don’t know where your coat is? How many times have I told you…

Any of that sound familiar?

Then there is school…

Sit there. Read this. It’s quiet time. Stop fidgeting. No, I don’t hear any buzzing. No, you may not go to the bathroom…AGAIN. 

Even on the playground with your peers the pressure does not stop. Though it may shift to a more subtle and unspoken demands to fit in. To act and behave like everyone else. To wear the correct clothes/shoes. To play the same game that everyone else likes even if you don’t.

Then it is back home to more demands…

Eat your broccoli. It is good for you. Why must I make something special just for you? Do your homework. No video games/television/computers. Get a bath. Brush your teeth. Go to bed. I don’t care if you aren’t tired. It is bed time. All the other children your age go to bed at this time. 

Are you tired and frustrated yet? Do you feel like you have no control over your very life? Someone else tells you when to wake up, what to eat, what to wear, when to go to bed…perhaps even when you can and cannot pee.

A level of demands and expectations that few adults except those in the military, prison or mental facility could or would endure. Yet our children are forced to conform to these standards ALL the time.

For the simple reason….

We are older and bigger.

That does not work in world politics….the work place….and it should not in a family either.

But there is a third type of demand that I had not considered until Jane Sherwin author of My Daughter is Not Naughty pointed it out…self-imposed ones.

I don’t know why I had not considered them before. After all I am the QUEEN of ‘perfectionism’ (which is why I have three finished books…or is it four…five…in my cloud…waiting from them to be ‘good enough’). I am the mom that PanKwake accuses of being…obsessed with cleaning. The partner that Cookie Monster must spank and tell to give myself a break.

So why could I not see that these self-imposed demands might be playing a role in all those times when I just could not figure out why PanKwake was anxious?

When Sherwin listed some of the demands that her daughter avoided…self-imposed ones…it was another light bulb moment on this journey. I mean who would believe that getting her own glass of water or turning on the television or bringing PanKwake her iPad was a ‘self-imposed demand.’

But look at it this way…if she got good at it…then it would move into that category of unspoken or spoken expectations. ‘Get your own water.’

Two that we struggle with and battle now are telling time and reading. She has built these two ‘demands’ up in her little mind to the point that it is easier to just avoid them…even if it causes meltdowns when she does not understand when her carer will arrive or I can’t be right by her side to read the Roblox chats fast enough for her.

Yes, we have carefully crafted a child-led environment and learning system that minimizes demands…spoken…unspoken…and as much as possible even self-imposed ones.

And it has paid off…big time. Meltdowns are rare now…especially big ones. My daughter is happy…and so are we. Even if it is a HUGE adjustment for the world’s most amazing man that I still have no idea what I did to deserve.

The thing is….experience has taught me….

If you take the pressure (those demands) off…she will eventually do it all herself…when she wants too….when she can tolerate it…when it is important to her. 

That is what happened with sequencing….now, next, then, first, second, third, etc. We had six weeks of focused speech and language therapy in the home. With no measurable improvement…and loads of avoidance. But the moment she got interested in a YouTuber named Aphmau, who crafts these intricate serials/soap operas using Minecraft, she mastered it almost overnight. ‘No, Mommy, that one comes after this one.’

It happened too with dressing herself. She steadfastly avoided it…until she became self-conscious of the changes occurring in her body as she approaches puberty (not that that is a good thing….but silver linings are important to hang onto, folks). Now she won’t allow any more help than laying out her wipes and clothes for her.

Of course, things are still on backwards and sometimes inside out. I simply point it out…not judgmentally, but more like… ‘Your shirt is on backwards. Is that comfortable for you?’ I have learned if it don’t bother her, then it should not bother me…and if someone thinks I am a ‘bad mother’ because of it… well, my pathological bullshit avoidance clouds up and rains all over them.

I admit that is a HUGE challenge. As a parent of a child with Pathological Demand Avoidance….you actually have to see it as a contagion. And welcome your own case of it with open arms. But when it comes down to all those spoken, unspoken and self-imposed ‘demands’ of being a good parent…the only one that matters is a happy, healthy child. And society can…

And then they can….

Because society…those people… simply cannot or WILL NOT make the effort to understand and empathize with the underlying stressors of not just demands but SENSORY OVERLOAD that cause our children to react that way…

But that is where we pick up next Meltdown Monday…



Meltdown Monday Pt. 2

Welcome to Volcanology 101, folks.

Today we pick up where we left off last week…talking about our little volcanoes. We learned last time that when the reservoir fills to a certain point with eruptable magma then there is nothing that can be done. That volcano is going to blow. The question was…in our kids what is this reservoir and what is ‘eruptable magma’?

The answer is two fold…

  1. Demands…spoken, unspoken and self-imposed
  2. Sensory Overload

Let’s begin with that first one and see just how far we get…

It should be obvious from the name…Pathological Demand Avoidance…that demands and specifically avoiding them is at the very root of this ‘whatever’. (I won’t say disease, syndrome or any of those words because they imply that something is ‘wrong’ with my child…when for me, it is a matter of DIFFERENT. Not wrong, not worse, not sick…just different.)

So what? I mean we all have demands placed upon us. And we cope. We learn to handle them. We suck it up and just get on with things. That is how life is.

That may be how some people feel and why this is seen as a ‘disease.’ But let me challenge you…

Do we? Do we really?

Alcoholism. Depression. Anxiety. Divorce. Post-Traumatic Stress Disorder. Anger. And even racism/isolationism/fanaticism. Aren’t they all signs and symptoms that a large majority of the rest of us are NOT managing the stress and demands of the world in which we live?

Perhaps our kids are merely expressing their displeasure at unrealistic societal expectations is a less socially acceptable manner than getting sh!t-faced drunk on Friday and Saturday night? Or popping prescription drugs to make them ‘happy’? Or hating everyone who is not exactly like them and blaming it on their god?

And while I am challenging your paradigms, your perceptions and belief-systems, here’s another one…

What do kids have to be stressed about? They don’t have a job or bills or any of the responsibilities of adulthood. This is the best time of their lives.

Really? Let’s look at that…

Don’t have a job? What do you call school then? They are expected to sit quietly at a desk for several hours each day. Produce busy work even if they already ‘get it’. Do exactly what ‘the teacher/boss’ says…when they say…without question…even if it does not make sense. They are expected to get along with everyone. And if that is not enough…they are then sent home to do more work. And they don’t even get paid for all that work.

How would you like to not get paid while be expected to take work home with you? And at the end, what can they expect from all this? More of the same in the form of a ‘job.’

Now let’s look at a couple of more of our expectations…

Sharing…we expect our children to share their toys…all of them…often with virtual strangers. I can’t count the times that I have seen parents in the park telling their child, “Go ahead. Let them see your ball. Sharing is a good thing.” But try going up to that parent and asking to borrow their mobile phone…or their tablet/laptop. See how quick things change then.

And tantrums? Not meltdowns here…even just normal every day ‘normal’ childish temper tantrums. Think about it for a moment. If your best friend calls crying or screaming about a partner or work, would you dare to tell her ‘shut up, I don’t want to hear your whining’? How about this one… ‘I’ll give you something to cry about?’ No, we show more care, understanding and compassion to our friends, co-workers and even strangers than we do the little people with whom we have been entrusted.

Yes, maybe once upon a time…in another time and place…or in other cultures even…childhood was this idyllic experience of learning, nurturing and growth within the safe watchful eye of the village.

But that is NOT the world that our children live it. They are assessed, evaluated, compared and measured against one another and our idealized view of what a ‘good boy/girl’ should be. And those pressures are immense on such little shoulders. None of our kids escape childhood unscathed. They all bear scars upon their psyches.

We all enter adulthood with burdens, fears and the makings of mental health issues of one form or another. Some of us become the bullies, hide behind our masks and pretend that everything is all right. And those are considered the successes. The rest of us…well…we fail.

No…from the moment we enter this world…and likely before…the words we hear most is…

NO! Don’t do that. You can’t be that. You’re no good at that.

Is it really any wonder that our PDA kids call us on our bullshit? And that is what they are doing. In my paradigm…my belief system…our children are the next step in human evolution…a gift…a blessing sent to clear away all those ridiculous ‘rules’ that are no longer serving our society. And my role as parent then becomes guide/mentor/advocate to sign post the ones that PanKwake truly does need to know. But that is getting off track for this one…

My point is for us to pause and think for a moment about those spoken…unspoken…and self-imposed demands…

Uh-oh though…I think that will have to wait for next week. But I do hope you will take a moment or two this week to ask yourself…

Do we (adults, society, this world) have it so right? Is my life with all its pressures, expectations and demands really what I want for my child? Or perhaps…could there be a better way? Maybe…just maybe…our kids get it more right than we want to admit? And maybe it is about bending…compromising…and creating a better world for us all?

(And yes…we will make it to sensory overload too…at some point.)

Meltdown Monday

At that conference I attended last week, one guy asked a question that I think plagues all parents…but especially those on the autistic spectrum (ASD)…and most especially those of us blessed with Pathological Demand Avoidance (PDA).

What can you do for them when they have a meltdown?

I will get around in a few Mondays to that, but first it is important to know/understand what a meltdown is…and more importantly what it is NOT.

A meltdown is NOT a temper tantrum.

A meltdown is NOT them testing your boundaries.

A meltdown is NOT them trying to manipulate you.

Then what the heck is it, you ask?

A meltdown is a panic attack.


Sensory overload.

And that is the hardest thing for parents to get…to understand. Simply because of the intense pressure and anxiety creating stress that society places upon us to control these monsters, make our children behave.

I know. I understand. I live it.

But let me help you to put this into perspective…

Seven years ago I had a miscarriage that left me clinically depressed with anxiety and panic attacks. I was forty-five years old with a BS in Health Education, including a background in psychology. I had been through Cognitive Behavioral Therapy and learned all kinds of positive self-talk and coping strategies. I had managed multi-million dollar accounts, babysat drunk celebrities and planned parties in the country estate of Duke…

And yet one day I found myself wandering the streets of London with my heart pounding, my chest so tight that I could barely breathe, my palms cold and clammy, everything around me was painfully loud and bright…and my whole body was shaking with great sobs that I could not stop.

This educated, once highly successful woman with all these ‘coping strategies’ could NOT cope. That is anxiety. That is a panic attack. It does not matter who you are or were. Where you have been or who/what you know.

In that moment you are helpless and out-of-control. Even…especially…your own control.

So a couple of years later when I read in Understanding Pathological Demand Avoidance by Phil Christie et al that meltdowns in my daughter were not temper tantrums (I knew that much already…but not what they were) but rather PANIC ATTACKS, I cried. I sat on our couch and cried my eyes out in guilt for all the things I had tried/done to stop her.

It was one of those light bulb moments in life when I realized…

If I as an educated forty-five year old woman could not control myself during a panic attack, how the H-E-double hockey sticks could I expect a six year old (at that time) little girl to?

I never again saw or managed a meltdown the same way. It was an instant transformation to empathy and understanding.

Let me give you another analogy…


One of my freaky fetishes is…volcanology.  Amateur anyway. One of my fav movies is the BBC docudrama Super Volcano about the eruption of Yellowstone. And if there is a documentary on the subject…I’m there. One of the first things that I learned was that beneath every volcano is a reservoir.

reserviorA couple of things to understand about reservoirs:

  1. Each volcanoes is different. Size. Shape. And even the content of the magma is different mixes of rock and gases.
  2. …but this is the important one, folks…WHEN THAT RESERVOIR FILLS WITH MOLTEN/ERUPTIBLE MAGMA, THAT VOLCANO IS GOING TO BLOW!!! There is nothing that the volcanologists can do except get any people around to safety and sit back and enjoy the fireworks. And learn…each and every volcanic eruption teaches them more about the nature of eruptions…and gets them one step closer to understanding and preparing for the next one.

What is that reservoir though? Hmmm….that sounds like a good place to stop for today. And to pick up next Monday…

Team PanKwake…

I mentioned the other day that I went to a conference for parents on Pathological Demand Avoidance (PDA). Most of it was a review of resources that I had discovered and adopted almost five years ago…before her autism diagnosis even. One thing about it though was that it was a validation and good reminder of how far those strategies have taken us.

A bit of background first though…from the time she was a baby as the mother of six I knew something was different about this one. But we muddled through with words like…colic…difficult baby…cranky…terrible twos…and she’ll catch up. Then when she was two and a half she had her first seizure. It took us a year to get the doctors to believe us that this was epilepsy and not just the random febrile fit.

But even then…there was no help to be had. Our paediatrician told me…’You don’t know what it is to have a special needs child.’ (Excuse me I raised one already!) We were left to languish under that woman’s care for over three years while PanKwake had seizures in her sleep, began to show the behavioural challenges associated with autism/PDA and fell further and further behind her peers developmentally.

In desperation, I sneaked into an epilepsy conference on behaviours in children with the disease. I say sneaked because it was a conference for professionals…nurses, doctors and Special Educational Needs Coordinators (SENCo). I was the lone parent in the room…and only my bachelor’s degree in health education allowed me to digest the jargon. It was the first time that I heard the term…Pathological Demand Avoidance.

While I put mental tick marks on every single characteristic they listed, my stomach dropped at the thought that my child might have this ‘disease.’ What they were saying about the prognosis/outcomes of the few children they had followed into adulthood was more depressing than you can imagine. None have qualifications. Almost none had jobs. And more than a couple had gotten into trouble with the authorities.

But there was just too many ticks for this to be dismissed as coincidence. So I bought the only book that existed at the time on Amazon…and devoured it in two days. That was quite a feat considering it like that conference was written by professionals for professionals with only a single chapter directed at parents.

By the time I finished that book, I was in tears and spiralling towards depression. There was NO DOUBT in my mind. PanKwake had PDA. And that ‘bleeping’ scared me to death.

But anyone who knows me knows…I am a fighter. Even when the odds are against me…heck, when they say it is impossible…I will find a way. Especially when they are impossible…I make ways where there are none.

To put that situation into perspective…I was forty-five, living in a foreign country whose educational and medical system I did not understand, my marriage had fallen apart, I had lost several jobs and had a miscarriage that left me depressed…clinically depressed. Now I believe that my child has this ‘new’ form of high-functioning autism with basically no future.

I closed that book with tears and I can describe everything about that moment as I said, “Not my child. That is not going to be my child. I don’t care if it kills me. I don’t care what I have to do. I don’t care who I have to fight. Even if I have to do it all by myself. PanKwake will have a future.”

And thus began our journey of the autistic spectrum. I did all the things I was supposed to…like battling for two years for a diagnosis and trying to work with social services to get her/us help. And I did more than a few things that I was not supposed to as well like home educating her and trying this ‘radical’ collaborative problem solving technique by Ross Greene.

So fast forward to sitting in that room on Wednesday…and I have no regrets. The whole things was confirmation that we are on the right track to give PanKwake the best possible future. And despite how hard this is…I was the smiling one…the positive one.

Then there was yesterday!

It was the roller coaster of Pathological Demand…rolled into a single day.

The night had not been bad. She only got me up three or four times. She was excited to have Mickey Mouse pancakes for breakfast (PanKwake, her online nom de plume…is a take off of pancake, one of her three dozen or so approved foods) at the table with us.

Then all h-e-double hockey sticks broke out. We had run out of whipped cream. She has to have whipped cream on her pancakes. It was the worst meltdown in a couple of months. She is typical for PDA in this too…so all the knives in this house are hidden. But I discovered that forks hurt too. It took half an hour to forty-five minutes with the carpet men working upstairs for her to calm down.

One thing that I have discovered that is not in any of their books is how important it is after a meltdown to let them know that you still love them. They may have no control over themselves in that moment but they can frighten themselves as much as they do you. So it is only natural for them to wonder…do they still love me?

Now with PanKwake she is NOT a touchy feely type person. So hugs are more rare than rainbows and something that gives you, not the other way around. But after a meltdown and a few minutes of alone time to calm herself…PanKwake desires your time and attention. So off we all went on a walk and to the park.

We manged to get caught out in rain and hail, making it home just in time for her carer. She loves her Mog time and yesterday was no different. They threw a party in Meep City on Roblox and had 30+ in her house. Mog was even helping her with the reading…the only time she will tolerate being read to now is computer stuff. It is a ‘demand’ that she just cannot manage.

But as I cleaned the house…and cried a bit, I realized the most amazing thing. I am no longer doing this alone. 

You see I had all those pieces of the puzzle for all those years…and we were still in ‘survival mode.’ The creepers and mobs of PDA would come and attack us. The we would respawn and fight them all again. And we were doing OK…we were surviving.

But the happy that I/we have now is because we are no longer waging this war alone.

Of course, Cookie Monster is the biggest factor. And every moment of every day I am grateful to Fate and the goddess for bringing this one of kind man into our lives. This is one of the songs that always reminds me of Cookie…

I still am not sure what that ‘something good’ is or was…and that is a bit scary because I worry that I will stop doing it and he will stop loving us. But I do my best every moment to make sure he knows how much he means to us.

He has made the total difference.

Just his calming and non-judgemental presence. I mean PanKwake wakes him up most mornings…with a water gun. And he just fires his right back. And during that meltdown? He calmly helped to disarm her. But what still AWES me is that he gets it…he just instinctively understood that she needed our presence to reassure her…to know that we still loved her. And after all that, he was up for a walk and the park…for her.

And the amazing Mog too. She is so much more than an employee…a carer. She too is a partner in this fight to give PanKwake a fighting chance against PDA.

There are others too…friends and homeschool groups.

Bottom line…it is not just me against the world to give PanKwake that brighter future. Now there is…


And as she says…Autism: Deal Wif It! PDA does not stand a chance against us.